By Taytum’s family
Since the beginning of my pregnancy things were rough. Twelve weeks in, I got optic neuritis and was hospitalized due to losing vision completely in my right eye. From then on, I was on steroids for most of the pregnancy which made baby T smaller.
I was seeing high risk Dr 3 times a week. she grew at a slower rate and the cord was barely giving her any nutrients, which made her grow even more slow. other than that, there were no issues and all bloodwork came back negative.
When she was born, the NICU team at Jackson did a ton of tests, which again came back negative. She had a small hole in her heart, but health-wise, she was 100% healthy! She stayed 30 days at Jackson and then we were transferred to Lebonheur. The Genetics team came in and ran a bunch of tests, which showed she had a gene mutation.
She was diagnosed with Cornelia de Lange syndrome (CdLS.) She has the NIPBL gene.
For now, we don’t know what everything will consist of as she grows up. She has done SO well and has hit every milestone; she is just growing slower than a normal baby.
We are truly blessed.
Her hole in her heart closed!
This mutation was completely random, we don’t know why it happened.
But we know the God has a plan. He blessed us with the most beautiful, smartest little girl who has literally beat ALL odds!
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