There are many hard choices when you start with treatments. I’m hopeful this post will help with prospective as you decide which path is for you. In my groups, these choices seem to be some of the more confusing ones for people to sort out.
First, DOR – this can be defined so many ways. Someone with an amh of 0.9 and an AFC of 12 can be labeled DOR if they are 30 years old but they are clearly in a better spot than someone with amh 0.09 and AFC of 2 at 30 years old. And someone with amh of 0.9 and AFC of 12 who is 40 would not be in the same shoes as the 30 year old with the same numbers due to decreasing quality as we age. So, as you think through the path for you, you have to consider your individual situation.
Sometimes jumping into IVF makes the most sense. If you are hoping for more than child, are young, say under 35, and have OK numbers (AFC is decent, Amh is slightly low, FSH is normal), it is reasonable to hope for a pregnancy AND something left over for the next child. Just be aware that it isn’t the most likely outcome. I have seen stats show anywhere from 35-45% of cycles end with extra embryos to freeze, and this includes everyone, even those who make a lot of eggs.
Also, remember that only about 37% of all first time IVF cycles in women under 35 result in a live birth. Obviously stats change all of the time, but read up on it and go in with an open mind. All of this is to say, IVF is not a guarantee. IVF works by taking a group of eggs, fertilizing them and narrowing them down to the best ones to transfer. In some of us, because we retrieve so few eggs, and you generally lose some before transfer, there is no narrowing down.
So I would think through these questions and possibly discuss them with your doc:
At my age, about what % of eggs can we expect to be healthy?
With my lab values and AFC (and any previous response from any other cycles) what kind of response do you think I’d have?
How much will each try at IVF cost me (us)?
How many children do I (we) want to have?
Are there any values like FSH where you would refuse to do IVF with me?
Some of the downsides of IVF is that it is quite expensive and usually cost prohibitive to do enough cycles. If you do have success but have nothing left to freeze and want another child you will be ‘9 months of pregnancy + however long breastfeeding ‘ older when you start for another child. If you do get pregnant but have a miscarriage, you will be 8 or 12 weeks or longer out of the TTC game. PGS testing can help decrease the chance of a loss greatly, but it is, like everything else in this world, no guarantee.
Embryo banking is essentially doing several retrievals over a period of time, likely PGS testing anything that makes it to blast, and then transferring when you have banked your total number of desired embryos. Banking can be a really helpful tool for women with low response. Think of the normal woman who gets 15 eggs in one cycle, maybe 9 fertilize and then she ends up with 5 blasts. Now think of DOR and getting 3 eggs per cycle, doing 5 cycles, getting 9 to fertilize and 5 blasts. Banking has its downsides obviously. It’s physically hard on the body to cycle over and over and over. It’s emotionally trying – imagine doing cycles and having nothing go to blast or no blast pass PGS – that is likely to happen a cycle or two for all of us. It can be quite costly depending on where you do it and it can be hard to find clinics who have packages or pricing to make it work for you. It also is long. You may think 6 cycles equals 6 months, but don’t count on that. You can be benched a cycle for cysts, or your hormones are out of whack, or your cousins wedding happens to fall at the wrong time, etc… I would plan on double the time. If I was planning to do 6 cycles, I’d give myself a year to complete them.
However, if you can endure all of that, you can end up 1 year older with enough PGS embryos to build the family you desire. It’s awful to go through but I think of it like labor – you won’t remember all the pain once you are holding your precious baby.
Questions to discuss with your doctor about embryo banking may include:
Can I (we) afford multiple cycles, is there any sort of package?
How do I (we) determine the plan – how many cycles to do vs how many embryos do I need?
Am I (we) prepared for the emotional rollercoaster?
If I(we) happen to end up with more blasts than I need, what will be done with them?
Some people give IUI a bad rap. They talk about success rates vs IVF as if they are comparing apples to apples. The reality is in most cases, they are speaking of a cycle that consists of an oral med and trigger shot (based solely on follicle size) compared with a cycle consisting of some sort of priming, an agonist or antagonist, injectables or injectables and oral meds, trigger based on estradiol levels, lining thickness and follicle size.
Most women couldn’t do IUI with the same protocols that are used for IVF because they would make too many follicles. It would put them at risk for high order multiples. When you are DOR, and only making a few follicles, there is no reason not to do a full, scientific protocol. When looking at success rates when IVF was canceled to IUI due to poor response, there isn’t a lot of difference between continuing IVF or doing IUI. If your tubes and sperm are good, you may benefit from being able to afford more cycles to allow you a greater chance to find the good egg. Let’s say egg #11 is the good egg, and you make 3 a cycle, then you’d be on cycle 4 when it finally appeared. Can you afford to do 4 cycles of IVF? Doing IUI with a full protocol is more expensive than just oral med and trigger, due to the medication cost, but still is a lot cheaper than IVF at most places.
Questions to discuss with your doc about IUI:
What protocol will you do with IUI? Is it the same as you would do for me with IVF? If not, why?
How much will the IUI cost? What’s the difference between IVF and IUI costs, monitoring, retrieval, transfer, PGS vs, sperm wash and insemination?
Do I(we) want more than one baby? If I get pregnant with one baby now, will I have time later to do this again?
Overall, the decision on how to proceed is a highly individualized and personal one. So much depends on how many kids you want, how much you can spend, and how old you are, not just for quality of eggs but also time to spend. I started with a doctor 4 years before I had my son. That’s a long time. We had several early losses. Each one cost me 8-12 weeks of TTC time. I had the one late loss which cost me overall 10 months of TTC time. It all adds up very quickly. If you are starting at 38 and want 2 or 3 kids, banking is likely the better route to be sure you have time. You can transfer a frozen embryo at 44 but making an embryo at 44 is a lot harder. If you are starting at 30, your eggs are good quality and you have more time so losing 12 weeks to miscarriage or breastfeeding for a year won’t make as much of an impact on your chance to have another.
Lastly, whatever you decide, try not to second guess yourself. Commit to it and move forward. Especially after I lost my twins, I regretted not having banked embryos and was so scared that I’d never have success, starting from nothing again. Then when I had my first, I regretted it even more as I was now months away from 40 and starting again, with nothing, except even worse labs and less, older eggs. I was beyond lucky to have a natural conception baby at 41, my second son. And now looking back, I hate that I suffered with blaming myself and saying I should have this or that. The regret and second guessing can really eat you alive. There is so much else in this process to get you down. There is no right answer or right choice, so trust yourself and know that at the end of the road, no matter how it turns out, you made the best decisions for yourself.
Something I often see in fertility groups are feelings of anger and frustration over being offered donor eggs or the suggestion to go down that path by a fertility doctor. I was there at one point. My doc was very straightforward which is one of the many things I loved about her. I didn’t want sugar coating, and ethically she had to tell me what was likely to be the easiest and most cost effective path to my desired end, a baby. But it hurt. I cried a lot.
She suggested I think through what I needed to do to close the door on my own eggs. I think she meant, how many cycles am I willing to go through, how much money can I spend, etc. I took it a little further and researched like a mad woman and thought through which protocols I wanted to try and if response was good on X protocol, I will do it Y times, etc. I was going to do one more cycle with a lower dose protocol to see how I responded on less meds since that would stretch my money farther, take the summer off and start down the path of trying the protocols in the fall. I got incredibly lucky and got pregnant with my twins that first lower dose cycle. Overall I spent a good 6 weeks mulling over the donor egg conversation.
I have thought about those conversations a lot over the years. I think several things may play a part in how we come out of them feeling and I hope with this post to help someone gain some perspective that helps them not feel anger, disappointment or defeat.
First, let’s look at why they bring up donor eggs to start with. When I was processing the donor egg conversation, I was putting together a shoe rack. I needed tools like a Philips head screwdriver and rubber mallet or hammer. I was thinking, what if I had only a butter knife? It may be possible to get the job done with a butter knife, but it would take longer and would have made it ridiculously hard.
(We’ve all used a butter knife for a screwdriver, right?)
I thought of the tools my doctor had to get me pregnant – eggs, sperm, medications, procedures. If I take away those tools from her, how is she supposed to build a baby? In this case, the more eggs you have, the easier it is to find a good one and get pregnant. I thought of my pitiful response to meds and my 2-3 eggs per cycle and I realized that my eggs were the butter knife. They may work, but it is going to be a lot harder. This isn’t my doctors fault. She offered me the Philips screwdriver. She explained that the screwdriver would increase the chances of building a baby, would likely decrease the time it takes to build and would very possibly lessen the cost to build the baby by doing less treatments overall. I had to make the choice between taking the screwdriver and the butter knife and she was doing me a great service by explaining that choice.
As much as I call my doctor a magician, she truly isn’t magical. Doctors only have so many tricks up their sleeves, and each trick requires tools. Offering donor eggs is compassionate and ethical. The doctor has to look at the patient and make the call on when not mentioning donor eggs would be unethical. If the patient is 25 and has low amh and poor response, because their egg quality at that age is still likely good, maybe not offering donor eggs right out of the gate is ok. If the patient is 40 with low amh and poor response, it would be completely unethical to cycle her over and over and never offer the donor alternative. In many cases, offering the screwdriver while agreeing to work with the butter knife is the right thing to do.
Now lets think about the conversation with the doctor.
Did you hear what they said? For me it was like what I imagine being told you have cancer is like. It was a shock and I felt a little like I was having an out of my body experience. I knew she was still talking but I wasn’t able to hear what she was saying, let alone focus on the words. Sometimes people walk away feeling like the doctor said there was no chance of them having a baby with their own eggs, period.
I would be shocked if any reproductive endocrinologist said to anyone that their chance of conceiving with their own eggs is 0, since no one actually knows that. There are natural surprise pregnancies every single day, even in women who thought they were well into menopause. Doctors by training know not to talk in the definitive. They may say you have a UTI, but then follow it with, “this antibiotic should kill it.” What they are probably quoting when they give you a chance of getting pregnant is a statistical chance of pregnancy using all the tricks up their sleeve. They may base this on their own practice data or maybe some published study, something likely based on age and the # of eggs you historically retrieved or are likely to retrieve. They aren’t saying this to discourage you. They are saying this so you can make an informed decision. They tell you this so you can factor that in when you are choosing how to spend the funds you have available.
Sometimes people say that the doctor won’t allow them to try with their own eggs. They believe the doctors are more concerned with their success rates than giving each person a chance. That may be true of a few doctors. What I believe is more often the case, is that if they truly don’t want to try cycles with someone it is because they feel sure they don’t have the tools to build the baby. Maybe their general population are PCOS or male factor and they have little experience with DOR. Maybe their clinic is in a location where they struggle to get embryology staff year round so have to batch patients, which basically is like when the butter knife bends – the tool you do have is even more ineffective. Maybe they are part of a health system or not in control of their prices, so feel you would be better served at a place that does mini cycles and banking packages where your money will stretch farther. It’s better to know how equipped the doctor is to handle your care before sinking time, heartache and money into it.
Some people react to the conversation about donor eggs as if it is no big deal. They love that they have that option, are not upset about the genetics and choose that path right away. Some choose it but mourn the loss of their own egg baby. For them, maybe the emotional toll of many failed cycles is just not worth it, but choosing that path is still a loss. Some women have seen negative test after negative test at home already and just want to be pregnant already. The doctor has no way of knowing whether you are going to be happy to move forward with donor right out of the gate or really want to try with your own until they have that conversation.
I believe most doctors who choose infertility for their specialty do so because they genuinely want to help people build their families. They go to school for hundreds of years to end up working long hours, weekends, holidays. They review lab results or call patients with directions while most are sitting down to dinner. They are busy and dedicated. They experience the pain of each failure right along with their patients and they feel genuine joy when they can celebrate a success. They look at us and want to solve our problem and it is a really hard thing for them to have to tell us that they don’t have a trick big enough to solve depleted egg reserves. The conversation is not just hard for you.
Before my oldest was born I created the cutest little nursery. It was an underwater theme, complete with a little navy blue upholstered armchair, found for a super price at HomeGoods. It got a lot of use once he was walking. Once I had a second son who was also walking, it became a big source of fighting. I went back to get another. Unfortunately that day they only had light colored prints. I setting on a cream color with dinosaur prints, knowing I’d need to find out how to change it at some point.
Over time, the light color chair turned various shades of brown and even some red (thinking a tomato may have been enjoyed in it). I considered re-covering it with another fabric and a staple gun, but I didn’t really know how to do that well. I wondered about dyeing with fabric dye. That sent me to YouTube where I learned about painting upholstery. Once I was sold on the idea, I took a good look at both and decided both chairs were in bad shape. So I ordered some chalk paint, bought some brushes, a sanding block and a spray bottle.
My 4 year old enjoyed the project at the start. We sprayed the first chair with water till it was pretty damp then started brushing on very diluted paint. Some people tell you how to measure, like 1 part paint to 2 parts water. I dumped some paint into a plastic container and filled it with water. Turned out, it was super diluted so maybe measuring is not such a bad idea.
Next we started painting the very watery paint (colored water) onto the chair. We worked hard to get into every crevasse. We sat it outside to dry completely.
Once dry, following the advice I found online we sanded the material to keep it from getting stiff. I was afraid it would feel more like outdoor furniture than a soft chair.
Once dried, we applied another coat of paint, and another and another and another. Turns out that you don’t really need to dilute it THAT much or wet the chair THAT much for it not to feel bad. As we went on and on, the kid got bored and grabbed my iPad.
So basically, we did coat after coat and let them dry. We sanded them in between only once or twice. We used a sealer to lock the color in so it wouldn’t run off. The chairs are almost as soft as normal and look so much better.
If I had it to do over again, which I may on a regular adult armchair, I would work harder at first to get existing stains out. I didn’t do that before and you can slightly see them still. I would not dilute the paint as much and I would sand it maybe a little more thoroughly, at least on parts that get touched.
When I first consulted an RE, I was under the impression that most who took the insurance I was so lucky to have would make me pay up front and file claims myself so I chose my clinic based on how they approached billing. I didn’t know I had DOR. I had never heard of AMH or FSH, so I didn’t stop to think that I may need a specialized clinic. I don’t think I am alone in this. Many women just starting this journey have no idea how to choose the right doctor. Eventually we figure out if we are in the right hands and hopefully find the right fit if we are not.
I never saw Dr. Check but over time in groups and reading research I learned of him. I have suggested him to those that have very high FSH and those that are in the PA and NJ area. He is known for taking tough cases and for an individualized approach for trying to get follicles to grow in women whose ovaries have struggled or failed. In the questions below he touches on many important points, from how his protocols work to the what supplements he believes in and the business of fertility.
Dealing with women who have a small likelihood of responding to meds very much limits the tricks in the bag of any RE. Some may refuse these patients because they don’t know how to help, or because they are worried about their stats, or because they feel ethically challenged for taking money for cycle after cycle with a poor prognosis. I don’t fault any RE who treats DOR primarily with donor eggs, but I do deeply appreciate REs that will give everyone a chance at their own. I have seen a lot of hope from women in groups who go to Dr. Check and I know he works tirelessly to help those in even the worse shape.
In Facebook groups people discuss their experiences and report what they are told by nurses and doctors. Often they get it right, but sometimes they don’t fully understand what was said in an appointment, especially when emotions run so high. I know it is easy when you hear something like donor egg to leave that appointment not fully recalling everything else that was said and hearing donor egg over and over in your head. So since I never consulted with Dr. Check and had actually sent many women to him, and gotten some mixed information about his approach, I reached out to the clinic to see if he would explain it for me to print here.
I think its important to follow your own path with your doctor. Everyone has an opinion and your care is best managed by the person monitoring you. For example, Dr. Check details below why he doesn’t want people taking DHEA with his protocol, but your doctor may prescribe it to you based on your labs and/or your protocol. I am hopeful for those of you that are not able to see Dr. Check but are interested in his approach, this will help you formulate questions for your own RE. The good news is that Dr. Check will take patients from all over, and remote monitoring is possible.
1. Can you describe your protocol with ethinyl estradiol? Why do you use that form of estradiol? How does it work?
First, I am going to also send you some articles that will deal with this in more detail. I am going to send you first article #632 entitled “The Multiple Uses of Ethinyl Estradiol for Treating Infertility.” We use ethinyl estradiol to lower FSH, but the reason that we use that as opposed to standard estradiol preparations is because it does not measure in the assay for 17-betaestradiol in the blood test. So we can evaluate people by the bloods because even if you see a follicle on ultrasound, it does not necessarily mean it is mature enough, or it may even be what we call an airhead. Sometimes it looks like a follicle but it is not making estrogen, so it is not a follicle. So it lowers the FSH, but it is not that we use it for everybody.
2. Do you feel that ethinyl estradiol is the right path for all women who have elevated FSH or would you reserve that for women whose levels are above a certain threshold?
We do not reserve it for women above a certain threshold but, for example, if we have a woman who is actually in premature ovarian failure where they have high FSH, low AMH but have an estradiol level that is less than 20 that does not rise, then they probably have down-regulation of their FSH receptor by the high serum FSH level. If you lower the FSH, you can have receptor restoration and then they can even respond to their own endogenous gonadotropins, or they can respond to a little boost of FSH at that point.
We also use ethinyl estradiol for women who have diminished ovarian reserve who wind up having short cycles related to a short follicular phase. I am actually going to enclose an interesting article, article #97 entitled “Successful Pregnancy in a Forty-Five-Year-Old Woman with Elevated Day 3 FSH and a Short Follicular Phase.” You need a certain number of days of estrogen exposure to develop progesterone receptors and although some people can conceive with a short follicular phase, it is much better to have a little bit of a length to it, even if you eventually get to an estradiol above 200. A lot of times we will use it to hold back the follicular development and then let it go and let the person respond to their own endogenous FSH or sometimes we will give them a tiny boost of FSH. We tend to give the boost when the FSH is closer to the normal range. If it is elevated, we do not want to add more FSH because that will shut down the receptors by raising the serum FSH level.
3. One thing I have noticed anecdotally is that some of us whose FSH is 50 or below tend to be able to get it down to a better level with supplements, diet, acupuncture, etc. When it has succeeded in doing this with a better FSH and a normal estradiol with baseline, they tend to respond better in stimulated cycles. Do you feel there is a place for trying to reduce FSH naturally?
Yes, the higher the FSH, the less tendency a woman has of making a mature follicle. We do not have a hard fast rule on that. If someone has regular cycles and they have an estradiol level of 45, if they are making a mature follicle I am not looking to suppress their FSH and then give them stimulation, I am looking at their own endogenous FSH to stimulate their follicle. If they are nowhere close to a mature follicle, then many times we will use the ethinyl estradiol, bring down the FSH, stay on it but then give a small boost of FSH to push the follicle to the right point. I am not so sure though that there is enough estrogen in supplements like wheatgrass or soy to lower FSH and I have no experience to say yes or no that acupuncture can help lower it or not.
4. Some doctors say you are good as your highest FSH, yet they will cycle a woman when her FSH drops. Do you feel that statement is false?
Absolutely it is false if I am reading it right. The highest FSH we ever had a pregnancy in is 185. We have had pregnancies at 163 and many people above 140. To me, there is no absolute level of FSH where a person cannot get pregnant. In fact, a woman who had a 185 actually is a woman who failed, I think, four cycles to get pregnant with donor eggs and she got pregnant with her own egg. Article #103 is entitled “Successful Pregnancy with Spontaneous Ovulation in a Woman with Apparent Premature Ovarian Failure Who Failed to Conceive Despite Four Transfers of Embryos Derived from Donated Oocytes.” We published that in 2006. Later she told me that when she was in California her level had been as high as 185 but I have it lower in the article.
5. Some doctors say that having high FSH is a sign of having bad egg quality. It seems from the experience of my group that egg quality is largely based on age, not lab values. Do you feel high FSH is a sign of bad egg quality?
No, not necessarily. I think you are right on point with that. I am enclosing article #702 which is entitled “The Younger the Patients, the Less Adverse Effect of Diminished Oocyte Reserve on Outcome Following IVF as Long as the Proper Ovarian Stimulation Protocol is Used.” If you look at the data and the table on that, you will find that women when they are 35 and under, when the proper low-dose stimulation was used, they had 80% as likely chance of getting pregnant as a woman 35 and under who has normal egg reserve. In the group that was 36 to 39, they were 70% as good. In the women who were 40 to 42, they were 50% as good. Interestingly, if you look at the data, it looks like the women who were 35 and under who have diminished egg reserve behaved the same way with pregnancy rates and live delivered pregnancy rates as women 36 to 39 with normal egg reserve and women 36 to 39 with diminished egg reserve seemed to do just as well as women 40 to 42 with normal egg reserve. Although we have written some papers on women 45 and 46 getting pregnant, there is no question age is a much more important determinant than the FSH, but the FSH becomes more important the older you are as far as the elevation is concerned. Eighty percent does not mean as much when you are young and a little more important but not tremendously important when you are 36 to 39, but you are only half as good when you are 40 to 42, so some of that answer is right and some of it is a little bit…There is some effect, but age is definitely much more important.
6. Often I see women with low AMH being pointed to IVF right away when they have unexplained infertility. Do you feel that is the best course of action for DOR? Why or why not? Indeed, many people will fail IVF and then get pregnant on natural cycles. The drugs have an adverse effect. I am also enclosing summary articles #706 and #690 about using the proper stimulation protocol. There is no one right answer to that question. IVF if done the right way will give a person a two and a half fold higher pregnancy rate per cycle than non-IVF, both in women with normal ovulation, normal fertile women and women with DOR. If you have a 35-year-old woman who has a 50/50 chance of being pregnant in three cycles with just good, old-fashioned sex if everything is normal, if she did IVF she would have a 50/50 chance of getting pregnant in one cycle. Obviously, for that woman it is not a lot greater benefit than having sex.
The way that most doctors will do IVF is using too high of a dose of FSH drugs, it is probably more detrimental than helpful. Done the right way, if a woman’s husband had borderline low sperm but not really enough that she really needs IVF or let’s say a morphology issue where morphology does not really matter much, but we can get the insurance company to pay for it, do you think there would be any advantage to doing IVF? The answer would be yes. We can’t guarantee that if we use drugs to make a few more eggs that they are all going to release, but at least with IVF we can go in and get them. The key is that it has to be done the right way.
7. Do you believe in supplements to enhance egg quality like CoQ10, DHEA, melatonin and others? Why or why not?
I see no harm in CoQ10. I see no harm in melatonin. I do not really know if it works or not, but I do not stop people. On the other hand, for a follicle to be a dominant follicle, what happens in normal ovulation is you have to convert these antral follicles into a dominant follicle and to do that, these antral follicles are androgen dominant and the follicle that can be converted to an estrogen-dominant follicle, that follicle is now controlling its own destiny. Once it does that, there are all kinds of interactions that occur that allow that follicle to reach complete maturation. The way some people treat, DHEA supplementation could help them because DHEA is converted to estradiol and the estradiol can lower the FSH and they may be benefitted. When you do it the right way, however, it is actually harmful because the DHEA will make the follicular fluid more androgenic and it is less likely to form a good dominant follicle.
We tried that and we looked at serum DHEA levels and it is article #661 called “No Evidence to Support the Concept that Low Serum DHEA Sulfate Levels are Associated with Less Oocyte Production or Lower Pregnancy Rates.” The original article came out of a Dr. Casson from Tennessee. Actually, it is interesting. His group were poor responders who did not have elevated FSH but had low DHEA levels and he found in some cases giving them DHEA made them make more follicles. Norbert Gleicher was a naysayer in the beginning, then became a follower when one woman apparently went from like three follicles to eighteen, but that is extremely rare. So the thought was if you have low DHEA levels, you should have less egg production and have a lower pregnancy rate. Though we did not see a statistical difference, there was a definite trend toward a higher number of eggs produced in an IVF cycle with low DHEA levels and also higher pregnancy rates. I forget what New York group did it because they all blend together, I think it was NYU, but a year later they looked at it better than we did. They looked at the follicular fluid level of DHEA to see whether or not…again them thinking that the higher the DHEA, the better the number of eggs and the better the pregnancy rate. There they found a significant difference in lower pregnancy rates and less egg production the higher the DHEA. So we say nay to using DHEA.
Wheatgrass has some estrogen in it, but it is like dumping a glass of water in a big lake. It does not really contribute much to the total estrogen production.
8. For those readers in other parts of the country and world, what advice would you give them to finding an RE that is willing to work with them?
That is a tough one because as you may or may not know, a lot of people do not want to be bothered with it because they like to do a type of cookie cutter shotgun approach because it is easier. Everybody gets put on the same regimen and it is too many different phone calls and nuances and it also takes an understanding of the concept because it is not one protocol for everybody because the protocols vary from person to person. It depends if the woman has adequate egg reserve, at least five to six follicles but her FSH is only 13 or if she had not had a period in four months or has not had a period in two years. It all changes. Some people need a boost and some people can take 150 IU FSH earlier. I have them all listed. In fact, I have another article that we wrote that talks about women who only had a single embryo transfer depending on their egg quality, but it talks about some of the protocols. That is article #105 that I am sending.
Also, from a business standpoint, people worry about the fact that the CDC publishes their statistics, and if they wind up taking people with diminished egg reserve, and even I admit done the right way that women 35 and under will have only 80% as good of a chance of getting pregnant and women 36 to 39 only 70% as good and women 40 to 42 only 50% as good. If you have a lot of those patients, they are going to lower your success rate and other people who have normal reserve are going to spend their money with the other center that seems to have higher live delivered pregnancy rates. The IVF center is getting paid for 1 IVF cycle but losing 10 other “customers”. If you can get them into a donor egg cycle, that is win-win. Do not lower your pregnancy rate and at the same time even make more money from a donor egg cycle than you do from a regular IVF cycle. So not too many people are that interested.
We are willing to take cases from around the world. I am a little short right now with associates. I had been doing it right now while we are down, but from a survival standpoint, I may not be able to do as many long-distance phone consults for survival to get enough people locally that I have enough work for my staff to see. I do them. I am happy to help them that way. I am adding another associate in January, but at the moment I am a little short. I lost one and one is on sabbatical.
9. Is there anything else you would like to share?
We have to face the reality of life that medicine is a business and that difficult problems take too much time and they do not pay more money. They are not going to get a large number of REI’s interested in this. There are some of us who care, like I do. It is part of what I do. In fact, MY WHOLE STAFF REALLY CARES. I would be happy to help out as best I can.
In May 2016 My first precious little son was born. He was perfect and adorable of course. But he had been stuck breech with his head under my ribs and when he came out, via C-Section, his head was pretty squished and one ear was folded down and flat. Meaning, where there should be some folds in the ear, it was more like Mickey Mouse. In the first couple of days it stopped bending down but it stood out further from his head than his other ear and was flat. When we went to his first pediatrician appointment at about a week old, the pediatrician I had selected purely based on the rave reviews of the hospital nurses mentioned to me that there is something they can do to fix the ear.
Overall it was a super easy, pain free process. Dr. Jandali shaved off a little of his hair then put little shapers on my son’s ear. We went back every couple of weeks and the doctor monitored the progress and made adjustments. We had to keep it dry and at one point it did come loose. The doc had said that could happen and to just add some tape and call the office.
He wore a shaper device for about 8 weeks. By then the cartilage had hardened and the new ear shape was set. It was beautiful. So easy.
I knew at the time it was the right thing to do. I didn’t want him bullied or made fun of for a funny ear and I didn’t want him to go through any sort of surgery for something as silly as an abnormal ear. I was initially worried about cost but Dr. Jandali took my insurance and they covered it no questions asked.
I recently reached out to Dr. Jandali to ask him for a Q&A for the blog. I want to help spread the word as it seems most people don’t know this option exists. If you are in the New York, Connecticut or Massachusetts area, I highly recommend him. He made us feel very comfortable and confident with the process. The office staff is lovely and they handled the insurance approval all before I ever got there.
Our Q&A is below:
Can you describe the process of infant ear molding?
Newborn ear molding is a proven, non-surgical procedure to correct an abnormally shaped infant ear. Molding is performed by placing a customized mold on the ear which applies gentle pressure to reshape it to the correct shape. This can be performed early in life because the ear cartilage is still soft and pliable. Complete correction can be obtained in almost all cases when molding is started early enough.
To actually perform the molding, a small area of hair on the scalp around the ear is trimmed. The area is then cleaned and the mold is customized and placed to correct the prominent ear or the ear deformity. Depending on what age we start the ear molding process, as well as the severity of the prominence or deformity, we usually mold for 4 to 6 weeks. The adhesive on the mold usually lasts about 2 weeks, so it does need to be replaced once or twice with a visit to the office.
When is it too late tostart infant ear molding?
Ear molding is ideally performed in the first 3 weeks after birth, while the cartilage is still soft. However, we have been successful molding ears up to 3-4 months old. The cartilage is firmer at this older age, and the molds often have to be in place for 6 weeks or longer. We can’t guarantee full correction at older ages, but we often obtain significant improvement and avoid the need for future corrective ear surgery.
Does the baby feel any pain or discomfort during the process?
Infant ear molding is not painful to apply or to keep on. It is completely non-surgical and applies gentle pressure to reshape the ear. A medical grade adhesive is used to keep the soft silicone mold in place. Most babies completely ignore it once it is in place. In addition, it doesn’t affect hearing development or the ability to breastfeed the baby. Babies can still sleep on their side and it doesn’t bother them.
Does insurance generally cover it?
The vast majority of insurances will cover infant ear molding for prominent or deformed ears, since it is considered reconstructive and non-cosmetic. We will work with all insurances to get approval. We obtain approval before the first office visit, so that molding can be applied as soon as possible at the first visit.
What are the alternatives to molding?
Ear molding is the best non-surgical way to correct prominent or deformed ears. We caution parents from attempting to just tape the ears back, create a makeshift mold themselves, or find an ear mold online. None of these are customized to the size of the ear and the particular deformity. They can distort the ear in the wrong direction, cause too much pressure, or cause irritation and infection.
If ear molding is not performed in time and the cartilage hardens, then ear pinning surgery (otoplasty) can be performed when a child is about 5-6 years old. Otoplasty involves scraping the hard cartilage to weaken it and then applying permanent sutures to reshape it.
The goal with ear molding is to avoid surgery, which has added risks, downtime, recovery, and out of pocket cost.
As I was thinking about a lot of time at home this spring, I thought I came up with a cool and original idea, an outdoor chalkboard to hang on our fence near our play set. A quick Google search proved I was not so original. Still it was a fun a project my almost 4 year old and I could do together and it is already getting lots of use.
First step was to get supplies. We used treated plywood, cut to about 3 x 5. I was tempted to go bigger but this seems good for my space. We used 2 and 1/2 inch decking screws to secure it to the fence. They came with a drill bit. I got black chalk paint and read on it that I needed a primer. I found one that is really cool, making the board hold magnets.
Once we gathered all of that (for about $100), we did a very light sanding of the best side of the wood. I actually have a small electric sander and if I had it to do over again, I would have sanded it more. It is smooth enough but could be smoother. We then brushed it clean and applied two coats of primer. We let it dry overnight then painted two coats of chalk paint.
Once dry, we hung it. We waited 3 days per the instructions on the paint, then conditioned it by rubbing chalk all over it then erasing it off.
So far so good. I am hoping to get 3 or 4 years out of it considering it is in the elements. Overall it was a really fun project to do along with my son. He felt a lot of pride in his finished project.
Currently stuck at home due to Coronavirus. It’s so tough. I always work from home but now I have two new colleagues distracting me all day long. Son #1 will be four in May and son #2 turned 17 months yesterday. So busy we didn’t even remember to get his monthly picture. (Who am I kidding? I managed to get pic on his month birthday maybe 3 times so far in his life!)
One thing that has been good is some programs like ABC Mouse and Hooked on Phonics are either giving away access for free or for a reduced rate. ABC Mouse has been particularly fun for my son. In the program, he does learning activities to earn tickets that he can then use to buy new stuff for his hamster or aquarium. He is saving up to buy a dog and eventually wants a baby unicorn. It’s great to keep them motivated. I am not sure on the levels though, as we started at level 1, and now am at level 5, as it seems like he isn’t challenged. I have him doing pre-k, and as I said, he is almost 4. I may up him to kindergarten soon. I want some challenge. Also, he has figured out he can redo the puzzles or coloring sheets without doing any effort and get 3 tickets each time – clever little cheat.
Other items we have been doing to keep us busy include yoga on YouTube. I saw many, but he seems to respond most to Cosmic Yoga. The woman did one for spiderman poses and one for a farm. She has a Frozen one we will try eventually. Our local kids musician is doing daily FB live shows and the local aquarium has some distance learning. I am finding it really hard to remember the times on these things, so will start doing calendar reminders. I think zoos all over the country are offering some programs.
I ordered a ton of foam craft kits. I have some finger paints I am hoping both ages can do – just have to see how much is safe to ingest (yes, 17 month old is still putting everything in his mouth, super fun!). We made a bird feeder and an outdoor chalkboard. We have matched socks and I think may make some puppets with the left overs.
I have also tried to take this opportunity to teach basic life skills. I have been having my older son cook meals with me, clean up with me, decorate for Easter, etc. Anything that I do I try to find some part of it he can do. He is an excellent egg cracker and is now able to measure fluid accurately in a measuring cup. He understands how to boil pasta and eggs and has learned how to clean windows and bathrooms. Life skills that are super important.
I felt that having younger kids was harder, as I have to entertain them all day instead of them doing their own thing. Then I spoke to some mom friends, and boy was I wrong. The pressure of homework and homeschooling to school age children can be a lot. We are basically taking 3 or 4 jobs and meshing them into one and hoping we all survive – the teacher, the employee or employees if both parents are working from home, and the stay at home mom. The house still needs cleaned, the laundry needs done, the work needs done, the teaching, and so on. It’s awful. I am grateful afterall that I only have preschool age kids.
Would love to hear what you are doing to stay sane and any suggestions of children’s activities in the comments! Help a Mama out. We have to band together now more than ever.
I grew up in Ohio and had never heard of a doula until I moved to the east coast. I know a handful of people who have used them and know a friend of friend of a friend’s cousin who is one, so I wanted to understand more about what they do. I vaguely remember that there may have been a Frazier (Best. Show. Ever) episode on doulas. I reached out to Melissa Carrick who is a doula and educator in West Seneca New York for some helpful Q&A.
I have heard of birth doulas, post partum doulas, etc. What types of doulas are there and can you give an overview of what services they provide?
* The term Doula is Greek for “to serve.” I literally use the term for anything! I have a business coach who is my business doula. A fitness coach who is my fitness doula, etc. What we hear and see most commonly are birth and postpartum doulas. A birth doula provides birth preparation and support, usually accomplished through two or more prenatal visits which include options for birth, birth planning, and coping & comfort measures during labor; continuous labor support throughout; and usually one postpartum follow up visit. A postpartum doula helps the family after birth to assimilate and integrate their “new normal.” They may help with such things as feeding and sleeping patterns, baby care and soothing, and providing additional resources of any mood disorders are a concern. In both cases, doulas do not replace the partners or take over, but rather give the families the tools and hold space for them to empower themselves in any situation. There are also end of life doulas that can help people and their families as they near end of life, to help the transition and the coping process be more comfortable, peaceful and respectful.
How do you choose the right doula – how do you know if they are right fit for you?
When choosing a doula, consider the skills that are important to you, rather than their experience. A doula should be kind, genuine, respectful of all choices, compassionate, caring, empowering, a great communicator… Experience in birth is important, for sure, but you want to be comfortable, uninhibited, and yourself around this person. Inviting someone to your birth space is a big deal. Are you comfortable making noises, being naked, being vulnerable around this person? It’s more of a feeling that you get when you meet with them. If you have any special circumstances or high risk consideration, it may be valuable to ask their experience. Ask open ended questions like, “how would you handle….?” “How will you support me and/or my partner, or include my partner…?”
What type of training do doulas typically have?
Training may vary. There are many online certifications, and some in person trainings. It usually involves doing some amount of “book work,” and reading, the learning part; in addition to The practical part- taking a childbirth education class, a breastfeeding class, finding a mentor to shadow 3 births, and then leaning on that mentor as you begin to take on your own clients. Currently there are no regulations on doulas so certification is not yet “required.” You may find a doula that’s been supporting births since they witnessed their siblings being born! I believe it is a calling that seeks you out!
Does the doula’s role change if you have a c section, whether scheduled or emergency?
The underlying role does not change. That is, to provide comfort, support, and coping strategies for the family. If it is planned, the doula and family have time to mentally prepare (which is all birth! Birth is more mental prep than anything!) and discuss options to have a gentle or family oriented cesarean, which would include a clear drape or cropped drape to see the baby as they are being born, skin to skin in the OR, the family staying together throughout the process, music, essential oils, delayed cord clamping, etc. If it becomes emergent, the doula will have already discussed the plan for this ahead of time during the prenatal education sessions. Hopefully the family has planned and understands the options and urgency that arise in this situation. I encourage the partner and myself to stick right by the moms side as long as possible to keep our attention on her, keep her grounded and focused, as all other attention is on getting things moving quickly.
If you are hiring a doula, at what stage in pregnancy should you start interviewing them?
Anytime!! It’s never too late or too early. I’ve had people hire me at 8 weeks at 36 weeks! Those that hire early don’t usually schedule a first visit until the second trimester and the second visit in the third trimester, but every doula does things differently.
Do doulas work in groups -or what happens if you are not available when I go into labor?
A lot of doulas are independent contractors, or work for themselves, but often have back up doulas in place. Some doulas work for agencies or collectives where there is a partner system and the two (or more) doulas share an “on call” schedule, and rotate. This is a great question to ask when interviewing: “do you have back up? Vacations planned? How many births do you take a month? Can I meet your back up?”
What are the typical fees for services performed?
Fees can vary. A lot of “doulas in training” offer lower rates until their training is complete. Some students offer free services until qualified by their certifying company. On the low end, average could range from $300-$600. For more experienced doulas, it may range from $800-$1500. In larger metropolitan areas like NYC, they may be well over $2000. Please consider the prenatal and postpartum visits, the on call nature of the job, the unpredictable hours and continuous support throughout labors that may last upwards of 48+ hours. Invaluable!
Have you hired a doula or are you a doula? We’d love to hear from you.
With our current healthcare system here in the US, IVF is often out of pocket and very expensive. Also in my groups I see people who don’t have access to doctors in their country or who are denied treatment for one reason or another. I thought about trying to cycle out of the country but the idea seemed overwhelming to me, when fertility treatments can already be overwhelming as is. There are services out there that make it easier. Ever heard of a medical concierge? I hadn’t.
I reached out to Oana Gharbi, co-founder of Medical Concierge France to understand more about what these services can do for those seeking treatments away from home.
What are the reasons someone may travel out of their country for IVF?
Depending on where you are coming from, the reasons differ. Americans choose to do IVF abroad most often for financial reasons. Stats say up to 70% of American infertile couples have to pay for IVF out of pocket. British women travel abroad for IVF because the NHS can have a long waiting list, it covers IVF only if you have never had any kids, and many other sorts of requirements. Private clinics in the UK have very high prices. Here in France, women benefit from 4 covered IVF and 6 covered IUI, but things like age limits, marriage requirements, being in a same sex relationship or requiring or desiring PGS testing may mean they need to go outside of the country. French women are the luckiest: they benefit from 4 IVF and 6 IUI cycles completely free, meds included, up to the age of 43, no waiting list. Unless they are unmarried, or in a same sex relationship, or they require PGS testing.
What is the benefit for using a medical concierge?
Infertility is strenuous as it is. Having to deal with the logistics of organising a trip abroad to do IVF doesn’t take any of the stress away, On the contrary! A medical concierge service takes care of all the little details that help to make your trip as uneventful as possible and helps you focus on what matters most: your cycle, your body, your future pregnancy.
What services does the medical concierge provide?
From looking up the best transport options, to offering you special rates to partner (3, 4 or 5*) hotels, translating your medical records and picking you up from the airport, a medical concierge takes care of everything for you. The services are customized and aimed to provide you with a stress-free medical experience. We accompany you to your medical appointments and we keep in touch with the medical staff on your behalf if you wish. We provide tips for spending your free time, arrange bookings at restaurants, spas, beauty saloons, shopping.
Can the medical concierge handle bookings for lodging?
Yes, we have contracts with hotels offering us special rates and upgrades, and with short term rental agencies so we can find the best accommodation for you.
How much does it cost and how do the fees work?
Our standard rate is 10% of your total medical bill. For an example, an IVF cycle at the American Hospital in Paris, meds included, would be around 7000 Euros assuming you are a medium to high med protocol, and our fee would then be 700 Euros. Translation services and chauffeured drives though are to be payed separately, priced by request.
IVF can be unpredictable, what happens if my cycle is canceled or I need to stay longer than planned?
There are various options. You may decide to do the monitoring at home in the US and come only for retrieval and transfer, in which case you will have to make a short trip overseas before starting your cycle so that you can come pick up your meds (prescription meds cannot be shipped to US and yes, the cost savings is substantial even with a plane ticket. One 900ui Gonal F pen costs a little over 300 euros in France versus up to 900 USD out of pocket in US. You may need to use up to 7 pens in one cycle, depending on the kind of protocol you choose to do. If you decide to spend 3 weeks in Europe for an IVF cycle and make a vacation out of it, should your cycle be cancelled you may decide to go back home earlier. We always advise our patients to make sure their plane tickets can be exchanged. As for the lodging, we assist you with the bookings and make sure cancellation options are very clear before you sign the contract. Again, you only pay us the agency fee. All the other payments go directly to third parties we put you in contact with.
What other types of medical services does your service help with?
We facilitate access to affordable healthcare in top notch facilities. We guarantee 48 hour appointments for every specialty. We have several fixed priced packages, including our Second Medical Opinion package. For 450 euros, we make an appointment for you at a top specialist, we present your case, we skype during the consultation to assist you with asking the questions you need answered, with us acting as translators and mediators. We provide you with a complete medical report with the doctor’s opinion and recommendations. All this from the comfort of your home, no traveling, no hassle.
So there you have it. We know that IVF works first time for only 35% or so of couples so thinking outside of the box to find affordable options can be key. Travel isn’t so daunting when you have a personalized translator and assistant walking you through the process. My cycling days are over, but thanks to my kids I may need to use this service for some sprucing up of the body!
Have you cycled out of the country? Would love to hear experiences and recommendations in the comments.
NIPT tests are screening tests for trisomies that are offered to women over 35. They have proven to be correct more often, meaning predicted the correct outcome, more often than the previous first trimester screening. They take just a simple blood sample and can be performed as early as 10 weeks. Common names are MaterniT21, Harmony, and Natera.
During my pregnancy with my oldest son, I was offered the Harmony NIPT test. My doctor was out of the test kit so I left with a lab requisition and was to come back in a few days. On my way home I started thinking that I recalled seeing something on the news about these tests, but couldn’t put my finger on it.
Basically it was a false positive for Edwards syndrome and a false negative for Downs syndrome. This lead me down a rabbit hole of research and ultimately to understand the limitations of the tests better.
So next I went looking for my real risk. It’s true that at 39, my risk of having a baby with downs syndrome was 18 times higher than when I was 25, but what does that really mean? The truth is that at 39 years old, I had a 0.73% chance of having a baby with downs and 1.2% of having a baby with any trisomies. So I had a 98.8% chance of having a normal baby, based on my age and stats alone.
So ultimately I concluded that I would be screening to see if my baby fell into the tiny statistic and then if I actually got a positive, I would either assume a small risk of miscarriage to confirm or disprove the result, or spend the rest of my pregnancy worried. Combine all of that with our perfect NT scan and it just didn’t seem worth it to me. Kind of a waste of effort (like these whole grain cheez it’s Delta is now giving out on flights!?)
Most of the time the tests results are right. Much of the time it is valuable and puts people at ease. I have seen a ton of women take them and they are correct and all is fine with their baby and they enjoyed knowing the gender early. I have seen one woman get a positive for Patau, do a confirmatory amnio and lose her normal baby to infection after. Maybe it wasn’t the amnio, she will never know, but she regrets her decision so much. I have seen women refuse the amnio and have stressful pregnancies, some resulting in normal babies, and some not. Often the ones that do not also have obvious markers on ultrasound.
On the flip side, I have seen the test identify a rare disorder, XXY, Klinefelter syndrome. This is often not found and if known, treatment can be given early that can make a marked difference in that boys life. In these cases, those tests are blessings, making the decision to test or not even more complicated.
To NIPT or not is really a very personal decision that should be made by the couple. If you have any doubt or questions, you should have access to a genetics counselor. Just be sure if you see one you are clear on who signs their paycheck, as some work for the testing companies. A non-biased third party can help you choose.