Tuesday, July 23, 2013

Decisions on Embryo Storage After Losing a Child to a Rare Syndrome

There used to be an online international surrogacy forum with an aptly named discussion board "Things We Don't Like to Talk About."

Transferring to multiple surrogates, selective reduction, embryo storage-- you know, all those sensitive, controversial and ultimately isolating topics that often pit one's ethics against one's wallet, that draw infertility patients to the internet in the first place.

And though we may have hated to talk about these issues, we, naturally, loved to read about them... because peeking at what someone else decided when faced with the same monumental decision sure can be of comfort.

This month I wrote a post for Fertility Authority-- Decisions on Embryo Storage After Losing a Child to a Rare Syndrome-- that would've fit nicely in that forum. Though the specifics of my situation are unique, I think it's less about my ultimate decision than it is about how I came to reach it. As the discussion board no longer exists, I've posted it here. 

21 comments:

  1. Wow. I found that really, inspiring's not the word (it's close), maybe, full on? I think you've nailed the best way to make hard decisions. Really good.

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    1. K, I'm fortunate to have connected with other parents who have had to make similar decisions. It's the best advice I ever received.

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  2. Your story is very inspiring. As someone who has followed this model for several years, all I can tell you is that India is in free-fall right now when it comes to the IVF/surrogacy business. The clinics have lost as much as 80% of their business due to the new regulations and they are all hitting a wall right now given the decline in business. I mention this to you, certainly not to add to your woes and anxieties, but the reality is that some (many?) of these clinics will probably not survive financially and will have to close their doors or enter into some sort of reorg with other clinics, downsize, etc. Ultimately this will impact the disposition of any genetic material left behind, which is what should be noted for those who have concerns and plans for future use of their genetic material. You MUST BE on top of the situation at all times and get your consulate or Embassy involved if you are getting resistance from the clinic. The US consulate (in Mumbai at least) is on top of this issue and they have assured US citizens who have residual embryos in India that they are working with the highest levels of the Indian government to get clarity on this issue. Therefore, since this impacts you, you should send them an email and get on the radar as well. There are, unfortunately, tens of thousands of other foreigners precisely in the situation you are in and many of these have either forgotten their stranded embryos or are not giving it much thought - which in and of itself is very dangerous. Accountability if very critical for anyone who has left behind any embryos because the IVF industry will continue in India, whether or not foreigners participate in it or not, and I would be very concerned about the disposition of embryos left behind and potential for fraud.

    I blog about these issues so stop by sometime:

    http://globalsurrogacy.blogspot.com/

    Best of luck to you and your precious family

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  3. Is it possible to take a US CITIZENS over there to be your surrogate and have your embryo implants and her ?

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    1. It is possible. Unfortunately, this would not alleviate the issues we face with using the embryos.

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  4. I agree that it was a great post. After my son died during fetal surgery, and all I wanted to do was blame myself, people kept reminding me that we made the best decision that we could with the information that we had at the time. Even though it still hurts:(

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    1. Becky, it certainly still hurts. When your only options are hard, harder and hardest, the best decision, upon reflection, tends to look pretty crummy. Recording the information I used to make the decision doesn't take away the pain, but I'm hopeful it will serve as a reminder of why I made the choices I did. Btw, really enjoy your blog:)

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  5. There are many clinics directly impacted by the decline in the industry, but there are just as many who are ethical and who have based their practices on IVF and infertility and who have made surrogacy a secondary business, rather than the main focus. These are the clinics one should seek when making a decision to go, or not to go to India at the present time. These clinics have the financial solidity to still present viable, safe and transparent surrogacy offerings to their Intended Parents, these are the clinics who are NOT incurring sudden high numbers of "hospitalizations" which are charged to clients directly and unexpectedly to make up for declining business to make payroll. Responsible clinics make sure to include more in their packages than others with the IP in mind, and a handful are including multiple transfers, all costs associated with the surrogate's pregnancy, including hospitalizations, and as many "line items" as possible in order for the IP to have confidence and a reasonable budget. Some of these clinics may have a base package a bit higher than others, but there is a great sense of confidence when knowing what to expect. I think most of us would pay a couple of thousand dollars more for peace of mind. These clinics provide appropriate documentation, and are there to make sure that the IPs have the best whole experience that they can. The clients of these clinics are not leaving spending double what they anticipated, happy that they have a child, yet wondering if they've been "taken" along the way. The entire experience is tough emotionally and financially, and every surrogacy itself is different. When searching for packages and clinics, look towards recent success rates, look towards packages with REAL inclusions, and ask volumes of questions. If these questions can't be answered, look elsewhere. I can certainly name a few upstanding doctors and clinics in India who fit this particular bill. I have spent the past 18 months exclusively researching, and personally experiencing this industry, and despite the negatives, I firmly believe that it is a winning situation for so many people who can't have children in other ways. I don't think that it's as dire as Jon suggests. Yes there are issues, but these can be addressed through discussions such as the one that Bernadette has brought today. This is an emerging industry, regulations must be placed to control the rogue clinics, and the ones who lack total transparency. I think that in the next year we will see a new type of clinic emerge, with doctors and staff who really WANT to understand the IP, and who truly want the whole process, including those tough decisions, to be discussed and handled appropriately. I do not think that the majority of doctors are out to scam. To your point, Bernadette, embryo decisions after birth is a tough decision for anyone to make, particularly when there have been chromosomal issues involving one or more embryos. Wise clinics would do well to not cycle that particular donor again, or to suggest further testing on the sperm itself. Bottom line, there are going to be mysteries for all of us along the way, whether we are pursuing surrogacy, or attempting to still become pregnant ourselves. This is not exact science, so we are all left making the decisions that sometimes are hard for even the finest doctors to approach. We still need to do our research, our soul searching and need to feel as confident as we can about the decisions that only we can make. No one else can touch such a personal decision. What to do with embryos is a world wide conundrum, not just a problem in India. India, btw, is a country that allows embryo "adoption", but as we know, only Indian couples would be allowed to "adopt" due to the DNA requirements for citizenship and exiting India. There's a great article on Embryo donation on ispub.com with worldwide statistics and suggestions.

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  6. Bernadette, you continue to amaze me. Sharing your hard decisions to help others along the way to make their hard decisions about embryo storage. Scarlett has such a strong wonderful Mummy. I hope that whatever you decide to do in the future about a sibling for Princess is an easier decision.

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    1. Thank you for such kind words. I'm so grateful for the support and stories that I've been privy to along my journey. Hugs to your littles!

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  7. Thank you. I needed to read that today.

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  8. Again, you're in my head as we ponder having another. The difference is that I'm approaching 38. We're paid up until May.

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  9. Bernadette, what a beautiful blog. I have to say I understand your dilemma. My baby nephew was born 7 1/2 years ago with a rare liver disease, which would require liver transplant. My sister and family were devastated. Thanks to the generosity of a family whose 5-year old passed away in an accident, my nephew got the transplant at 10 months and he survived. So my sister for a long time was hesitant about having a second child thinking she might have to go through the same dilemma. Thankfully my niece was born healthy 4 years later... Only you will know what to do with your frozen embryos and when you will be ready to have another child. Thanks for all your inspiration, and best wishes in whatever you decide.

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  10. No one becomes a parent expecting to face decisions like this. Thank you for sharing how hard it is to make life altering decisions with the knowledge that you will never have as much information as you'd like.

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  11. Your strength is astounding. My heart goes out to you for your loss and for the decisions that lie ahead.

    ICLW #50

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  12. Hi Bernadette, I think about you often and was wondering if you would be thinking about this. I understand how hard your decision is as my brother and sister in law have also been thinking about the same thing. They have spent a lot of money on genetic testing but are told they would have to spend more to have a more comprehensive screening for genetic problems....they cannot afford to do this with a severely disabled son and a 8 year old daughter to care for.
    Best wishes what ever decision you do decide to make and we are all behind you 100% xx

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  13. Thinking of you always, Bec! Thanks for sharing your personal story. Genetics is such a misunderstood field. The cost of testing is astronomical and at this point in time, it's almost guaranteed to leave you with more questions than answers. Wish we could all peek 50 years into the future. Thanks, as always, for your support. Hugs to your Kai!

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  14. Hope you and yours are well ... I miss your regular updates :)

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  15. Missing your posts and pictures of Princess, but I'm overjoyed if you've managed to get back to a lovely, uneventful, normal life. Wishing you all the very best. (longtime reader)

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