“She’s rocking life. She’s absolutely amazing….”
Rosalie Pare, 03/28/2015, Trisomy 18, North Kingstown, RI
At 25 weeks of pregnancy I began to measure small. I was diagnosed other IUGR and placed in biweekly nst’s and biophysical profiles. I also had a level 2 u/s weekly. I declined genetic testing and hoped for the best. The only physical abnormality they could find was a dilated Cisterna Magna in the back of her brain, and the perinatalogist differed whether it was even out of normal range or not. The Genetic counselor even said she highly doubted a trisomy as Rosalie was essentially perfect other than size. Well: out she came at 39 weeks. She was very weak and needed cpap. The first thing I was told was “she’s beautiful but her chin in a bit small”. I remember thinking how odd it was that they said that.
Long story short, her diagnosis was official on day 5. It was absolutely unexpected and shocking. The neonatologist did not say what genetic disorder he was suspecting and I certainly didn’t expect this. I thought Russell Silver Syndrome!
The team told me basically to choose comfort care and that a heart surgery (moderate VSD found after murmur detected) would almost be inhumane.
And then a occupational therapist from heaven changed everyone’s mind. She fed! Like a champ! Suddenly it was like she was a different baby to them. Yet they still told me to cherish each day for there won’t be many.
Rosalie is only 9 weeks old but I literally can see no difference in her from my other babies besides a MIT of lethargy. She’s healthy and gains weight steadily. She may or may not need VSD repair surgery but it’s not affecting her yet. She’s rocking life. She’s absolutely amazing….