A couple weeks after Kayden's delivery, we found ourselves in my OB's office. I had been there so many times in the previous months, the staff felt like family at this point. What I didn't know is that Kayden's karyotype analysis (genetic study) had come back and it showed an anomaly:
More than likely: it's pretty easy to spot, right? Usually you have 23 pairs of chromosomes. Sometime those chromosomes don't translate correctly when the cells are dividing and you end up with one less chromosome or one extra. In downs syndrome for example, a child would be born with an extra chromosome #21, or "trisomy 21". Well, in case you didn't notice, this picture shows that Kayden had "trisomy 8". See the extra chromosome #8?
The pathology report above says that a trisomy of some sort is the most frequent cytogenetic abnormality contributing to pregnancy loss. What my doctor added was that, because so many of Kayden's cells were affected, it most likely meant that my egg had an extra cromosome #8 to begin with. (If it had been the sperm, it would have likely been a "slow swimmer" and wouldn't have made it to the egg first).
Every documentation I could find showed that this type of trisomy 8, (which is a COMPLETE trisomy rather than a MOSAICISM) is "universally fatal"- meaning it's incompatible with life. I started wondering how on earth Kayden survived so long and grew perfectly on track. When he was born, he had no physical manifestation of a genetic disorder. PLUS: when Scotlin had this test done, the sample tissue was taken from his actual body, and Kayden's was taken from my placenta. It wasn't adding up, but my OB didn't know anything about it, so I had to wait to meet with the specialist.
July 25th, I was SO GRATEFUL to meet Dr. Mark Grant in Columbia. I won't detail our whole conversation, but basically he had the same suspicion I had and decided to talk to a geneticist to confirm. So, there I was wondering if I have some crazy problem with my genes that's killing my babies and Dr. Grant rushes in to save the day telling me that he and the geneticist talked and decided that the most likely cause was:
NOT TRISOMY 8!
The only way to be sure would be to exhume Kayden's body and retest using a sample from his body. HOWEVER-they didn't think that was necessary and that because he made it to 27 weeks w/o any abnormalities and had a completely normal growth pattern, the trisomy was most likely confined to my placenta. I said, "Oh, that's a thing...that's possible?" And he said "Absolutely."
So...for years we thought Scotlin died from some awful stroke of un-luck. Then I miscarried and they thought that was just another crappy thing that happened. But as soon as Kayden died, my doctors rushed in to tell me that they think all three of these losses are connected somehow and they put Dr. Grant on the case to figure out why. Yesterday, I had a bucket-load of blood drawn to HOPEFULLY find a cause. Now we play the waiting game for a couple weeks and hope to get that phone call. In this case, we're thinking that bad news is better than no news, because it means there's something detectable that can be fixed.
Until then, we'll just live knowing that our boys are perfect and we're so darn lucky they chose to come to our family.
I hope they can find an answer- no one should EVER go through what you guys have. I'm so sorry for the losses of your beautiful boys.
ReplyDeleteI have to say I'm excited that they seem to be making progress. Love you, Whit, and your pretty Lytle family.
ReplyDeleteI am amazed that we live in a world where so much can be researched and hopefully understood. Thank you for sharing the details. I also think that it's incredible that you have recently become a nurse, so I'd assume all the medical jargon makes more sense to you.
ReplyDeleteMy heart continues to hurt for you and hope and pray that some answers can be found.
A mutual friend (Pattie) commented on your FB post today. I am sad for your loss, and want to give you encouragement. My husband and I married in 1992 and waited for the babies to come. We watched all of our friends have children. And kept waiting.
ReplyDeleteIn 2010 when our fourth IVF was unsuccessful, we were done trying for a family. We had suffered through two miscarriages, a failed adoption, and countless invasive and expensive medical proceedures. My Reproductive Endocrinologist wanted me to come to a follow up visit and although I felt it was pointless, I did. Thank God! He recommended we keep trying and suggested we consider using donor eggs. Two years later and through the grace of God, the miracle of science, and the compassionate gift of a young woman, we are celebrating our daughter's first birthday.
We hope to have the medical debt paid off by the time she goes to school. But the money is nothing compared to the emotional cost. I spent every moment of the pregnancy anxious, and even months after she was born I still expected her to be snatched away somehow. With each passing day, she mends our hearts a little more.
So even if you get sad news from the specialist, try not to give up hope. There are still a lot of options for you.
We pray for you and Evan every day! :)
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