CLAIRE’S STORY

On 4/21/15 we welcomed our beautiful daughter Claire Perie Stibbe into our crazy family. She weighed in at 6lb, 4oz and arrived via c-section at 1:31pm.
The minute I saw her face the tears started flowing. She was so BEAUTIFUL and I couldn’t believe I was a mother to a little girl. They were able to lower the surgical curtain so I could immediately see her come out, they did a quick Apgar check and cleanup, and then she was laid across my chest. It was as perfect of a moment as I could have imagined.
Claire’s due date was May 7, so she was early// born at 37w, 5days. I had been monitored throughout my pregnancy for various reasons, and while I was planning to have her early, no one was planning on April 21! Her amniotic fluid levels had dipped very low at my appointment on 4/20/15. My OBGYN, Dr. Evans (fantastic!), and I made the decision to deliver the next day. We had been doing bi-weekly NST’s and she had never “passed”: obviously, something was going on and she was better out than in. This was so similar to the circumstances surrounding the twins that it was making me nauseous, irritable, and beyond stressed. I just wanted her out, and to meet this little princess!
I’ll try to get through the rest of Claire’s story without being too emotional.
One of the reasons I was being monitored so closely is because her quad screen came back elevated for Down Syndrome. She had a 1:158 chance of having it, so I was referred to my MFM Dr. Barsoom (same man who cared for me while pregnant with the twins, and the Michael of Sam Michael).
Dr. Barsoom didn’t see anything suspicious or indicative of Downs on my ultrasound, so we were very positive things were going to be fine. She was measuring small, so he wanted to keep an eye on her growth. Basically, her risk of having Downs went to 1:360– we turned down the amniocentesis, which would have given us a definite yes or no answer, because we would still carry this baby girl and love her just as much as a “typical” baby no matter what.
Because of her size, I had another ultrasound scheduled at 28 weeks and 34 weeks. My 28-week ultrasound looked great, but the 34-week ultrasound showed her falling down on the growth curve. Dr. Evans had me see Dr. Barsoom one more time. Barsoom measured Claire a little bigger, so we had a follow up ultrasound at 35 weeks. She remained in the same 30%-ile, so he was fairly confident things were okay with my placenta and her umbilical cord. Just to be more certain, Dr. Evans and Dr. Barsoom both agreed on bi-weekly NST’s (non stress tests).
Well… My NST’s never went well so I had to follow up with ultrasound for a BPP (biophysical profile test). She always passed those!
Until April 20… Her amniotic fluid went from a 17 on April 17 to a 5.5 on the 21st😦
After talking with Dr. Evans it was decided to deliver the next day. Clearly something was going on, I was close enough to full-term, and baby shouldn’t need much, if any, time in the NICU.
Things got put in motion fast– I called my family to see if someone could come help with the boys, canceled and rescheduled our huge amount of appointments, and got packed to meet baby girl!
The day went great, the delivery went great, and I was on a high.
After being wheeled into recovery, and fawning over our unnamed princess, Dr. Evans said something I’ll never forget: “Well Trisha, I am concerned she does have Down Syndrome.” After that, I heard nothing. Nothing. I stared at Adam as he slowly nodded his head in agreement. I couldn’t see it. Her face was perfect, her features just like Eli’s. And she IS perfect. Perfect. And so loved.
The next 48 hours were a whirlwind. I was recovering, Claire was learning the ropes of breastfeeding, and a few tests were ordered. The most important being a FISH blood test to confirm the DS and an echocardiogram (About 40 to 50 percent of babies with Down syndrome have heart defects).
We got the results of the echo first– Claire does have an ASD and VSD (Google for info). She will meet with cardiology in a few weeks to discuss treatment, but we are more than likely looking at surgery.
The FISH test came back later Thursday afternoon and it was indeed positive.
For everything that has been thrown at us in the past week, I think Adam and I are doing the best we can. I’ll admit, when I first was told she had confirmed DS, I was mind-numbingly, heart-wrenchingly devastated. All of these plans we had for our baby girl went out the window. New worries entered. And frankly, I was pissed. How much more could our family be thrown? For every “God only gives you what you can handle” comment I simultaneously wanted to cry and punch someone in the face.
Going through what we did with Sam and Jack, I really thought we had met our max.
But Claire Perie Stibbe has absolutely stolen our hearts. The amount of love we have for her is indescribable, and I can’t imagine our life without her.

We love you fiercely Claire– Don’t let the world change your smile, let your smile change the world.