A message from Norah’s mom:
Five months after our second miscarriage, my husband and I received the best and most devastating news of our lives. We were four months pregnant, however there was something wrong with our baby’s brain. We were sent to a geneticist and at that ultrasound we found out we were having a girl and she had dandy-walker, which meant she was missing her cerebellum and that she also had a large cyst at the base of her brain. Norah was also diagnosed with a heart defect, one of the chambers of her heart was larger than the other and it faced forward instead of to the left.
We were given the option to terminate the pregnancy because many children born with this condition are severely manually and physically handicapped if the child survives. We decided since we had been trying to get pregnant and after loosing 2 previous pregnancies that our baby deserved a fighting chance. As my pregnancy progressed her diagnosis began looking better- more of her brain was developing and her cyst was getting smaller and there were no signs of hydrocephalus.
We were prepared for Norah’s birth, so we thought. We knew what to expect with Dandy Walker and with her heart. At 32 weeks gestation, we were diagnosed with intrauterine growth restriction- she wasn’t gaining weight or growing at all. The decision was made to induce early because it was more safe for her to be out getting medical attention than stay inside. Six hours before induction I went into labor which was 15 hours of a medically hard, distressed labor before meeting “our light” Norah.
Norah was immediately taken to CHCC to begin her journey in the NICU. He official diagnoses are Dandy Walker Variant, Spina Bifida Occulta, Congenital Heart Defect.
Norah is currently doing very well. She had spinal cord surgery in July to release the tethering due to her spina bifida and she is doing much better with that now! Norah has recently now developed a voiding dysfunction due to her spinal cord issues. We are also now working through a sensory processing delay.
Through this all Norah remains our happy little light.
