March 17, 2014 § 5 Comments
As many of you know, Justin and I have mostly only ever considered adopting. It’s been a decision of conviction for us, call us overly influenced by Jeff Sachs, but it seems like the world is pretty full. Living in NYC we hear often about the nearly thousand, local, 18-21 year old ‘kids’ aging out of the foster care system monthly. I was raised by the village and ‘adopted’ by many families throughout my life. Some of my deeper hurts in my younger years came from the rejection I felt from not feeling like I was a ‘real’ part of family in many situations, including with my own family (at some points – probably normal for many people.)
Because of all of this you can imagine our shock in January when we found out that we were almost 2 months – despite taking birth control. Shock.
We went to the first sonogram in February and saw our perfectly formed little bean. Heard her heartbeat. We were shocked and thrilled. Shocked.
We began to warm up to the news – even managed to tell our family. Their excitement was contagious. We felt young. Living in college housing. 600 sq ft. Planning for a baby. Just like kids in their 20s.
A popular upper west side baby store was going out of business, a friend tipped us off, we bought a fancy city stroller for 1/2 off. We hope we hadn’t jinxed anything.
We were nervous about our end of trimester exam that looks for signs of Downs. We talked through how honored we would be to have a Downs child.
We went in for the exam and the sonogram showed some liquid behind the baby’s neck. Normal is under 2.9. We had about 5.3. The exam was immediately re-directed. The trisomy abnormalities were introduced. We were scheduled for a biopsy on the baby’s placenta. A procedure that comes with risk of miscarriage.
It was a long, long weekend. I read too much online. I decided that as long as the liquid hadn’t increased, everything would be fine. I knew if it did increase it was very bad.
We went in last week for the biopsy. As she did the sonogram I could see that the liquid had increased. I asked the woman doing the sonogram to measure the liquid behind the neck. It was a 7. More disconcerting was that the liquid had moved over the crown of her head, down her back, and there was also now liquid on her abdomen. She was the same wiggly, squirmy baby that we had seen the week before. Proportionally perfect. Nasal bone present. Crown to rump measure showed perfect growth for where we are in the pregnancy. We looked at her arms & tiny hands & fingers. She put her feet right up to the sonogram and we saw their little toes. The Dr came in to do the biopsy and confirmed our worst fears. The ‘space suit’ of liquid around her was a very bad sign. The ‘space suit’ is a cystic hygroma and presents in 1% of pregnancies. 50% of these have chromosomal abnormalities.
About 36 hours later they called to tell us that we were the proud parents of a baby girl, who sadly has a chromosomal abnormality called Trisomy 13 or Patau Syndrome. Her likelihood of survival is 2-9% – IF she makes it to birth. The likelihood of a live birth is 2-8%. If she is born there is a high chance of significant congenital heart defect. Depending on her health, if she is born, the surgeries needed to correct the defects may or may not be done.
I want to reiterate to all of you that are still in your child bearing years, there is a 1% chance you will ever have a pregnancy with cystic hygroma, and a Trisomy 13 diagnosis is 1 in every 20,000. This is so rare that we have agreed to be a part of a couple of studies in hope of helping advance scientific knowledge about these conditions.
Here’s a picture of our girl, I’ve used arrows to try to help you see her space suit. If you follow the line from the bottom where you can clearly see the space between the baby and the sac that holds the liquid, you will more easily see that it goes around her head to her belly – the space between the outer line and the baby’s body is the indicator of the problem.
We’ve named her Wright Whelan.
Wright carries within it’s meaning:
a deep inner desire to serve humanity and to give to others by sharing money, knowledge and experience, or creative and artistic ability. Those given this name are often orderly and dedicated to building their lives on a solid foundation of order and service. They value truth, justice, and discipline, and may be quick-tempered with those who do not.
Whelan (the family name of my Uncle Kenny) means joyful.
We will go in about every two weeks for a sonogram. This is to check on Wright’s health and the status of the CH.
There is nothing that can be done, this situation was not caused by us and cannot be resolved by us. I spent some time this weekend with Dr. New – she’s one of the world’s leading doctors on pre-natal disorders and the woman who is leading one of the studies that we are taking part in (we had no idea when we agreed to the study) and she re-iterated how rare this is, and how it is not a consequence of anything we’ve done. Sadly, this also means there is nothing any of us can do.
Despite being past my first trimester I’m still incredibly sick and sometimes, in a bit if denial, I tell myself this is a good sign…
What I’ve realized is that it is very difficult for people to talk about these things. People want to celebrate a perfect pregnancy, but they are at a loss when it comes to high-risk or pregnancies that present with ‘abnormalities’. Please don’t tell a pregnant woman or a couple that are pregnant with a child with less than a 2% chance of survival that “everything’s going to be OK” – it’s ALREADY not OK, now it’s just a matter of HOW not OK.
Also, please refrain from
asking a currently pregnant woman about their future plans for children. I’m amazed how quickly people launch into the solutions for a woman who has such a difficult diagnosis. The last time we saw our baby her heart rate was 180 bpm, she had four chambers of her heart, perfectly formed limbs, her organs were forming internally, her measurements were right on target, and she squirmed so much they had to work really hard to get her heartbeat. For now, our heart and our energy is with this child – we are trying to make it through today – not think about what we can do when this whole ‘sad/tragic/problematic’ pregnancy is over. To us, Wright is perfect and we are concentrating on making the best decisions for HER.
Hopefully this clears some things up for all of you who thought I was getting fat – I’m not fat, I’m pregnant (well, and a solid amt of pounds over my normal weight.) Also, for those of you who have inquired as to what’s been going on, we can share it here once – without the heartbreaking process of having to update a lot of people again and again.
Please continue to hold baby Wright in your hearts as we do. Also, please know that my already reclusive tendencies are at an all time high, as well as trying to gauge if I’m capable of doing Boston, and trying to catch up/keep up with school. I ask for a lot of extra grace if my communication comes from platforms like this (or social media) where I can communicate broadly and quickly.
I also want to give thanks from the bottom of my heart for your thoughtful emails, cards (you know I love getting mail), voice mails, texts, and incredibly thoughtful deliveries of flowers, cupcakes (from my sister-in-law who nailed it), food, and an Amy Poehler highlights reel (from the other sister-in-law) appealing to my other love language – laughter and SNL. My thank you notes may run a little behind but you’ll get them. We feel deeply loved and supported in this very lonely process.
If you want to know more about Trisomy 13 there is a website called trisomy.org. March is awareness month for chromosomal abnormalities and their site had a lot of good information on it, the majority of info is in Tri 18 or 21 – but you can read their description of Patau.
Obviously, we welcome your thoughts and prayers. We feel very realistic about the outcome of this situation, but are strengthened by your kindness.