My daughter’s story starts when I was just 12 weeks pregnant with her. I went for my routine 1st trimester screening, and was told that my amniotic sac was too small and there wasn’t enough room for the baby. They told me to go home and wait for a miscarriage, there was nothing I could do to prevent it from happening. If I hadn’t had any signs of a miscarriage after 4 weeks they wanted to do another ultrasound.
The next 4 weeks I spent praying for my little baby. I went back after 4 weeks and was told that the baby was doing amazing and that she was only the 3rd baby they had ever seen survive the conditions she was in. The next 11 weeks of my pregnancy went very smooth. On November 10, 2011 my water broke when I was 27.5 weeks pregnant. I was put on hospital bed rest until she was delivered. After 3 weeks I started to get contractions and 18 hours later she was delivered via emergency C-section.
Zoey was born on December 4, 2011. She was 9 weeks early and weighed 2lbs 13oz. The nurses wrapped her up and showed me her face before taking her to the NICU. My husband and I were told that a nurse would come get my husband in about 1-2 hours, after they had evaluated her, so he could see her. After 4 hours we were getting really anxious to know what was going on. A doctor finally came in and told us she was doing well but she had a problem that needed to be addressed immediately and they couldn’t help her. She had a TEG fistula, which meant that her esophagus didn’t attach to her stomach. She was sent to a hospital an hour away. I demanded to be released from the hospital early because she was due to have surgery on the 6th. I wasn’t able to make it to the hospital before her surgery but I was there waiting for her to get out. She did amazing, and is believed to be the smallest baby in the country to ever receive the surgery minimally evasively.
In the following days she seemed to be doing really good and we thought she just had to gain weight before she could come home. Unfortunately she started having problems with her lungs. It turned out that the heart murmur that every baby is born with hadn’t closed like it should have and it was causing her lungs to flood. When she was 26 days old she had heart surgery to close the murmur. Once again she did great and was well on her way to a fast recovery.
January 14, 2012 she was release from the hospital weighing only 4lbs 5oz. She had several doctors that she needed to follow up with including her regular pediatrician. During one of the first visits to the pediatrician he noticed that she had a sacral dimple. We had an ultrasound done which should there was something on her spinal cord. We were referred to a neurosurgeon.
During the period that we were waiting to see the neurosurgeon I started to notice that Zoey had a ridge going down the middle of her forehead. I figured I would ask her pediatrician about it when I saw him again, but I forgot to and figured if it was something to worry about he would have said something.
When I met with Dr. Mohan, the neurosurgeon, the first thing he did was feel her forehead. I was confused because we were there about her spine. He told me that she might have craniosynostosis and that he wanted to do a CT of her head as well as an MRI of her whole spine. A few weeks later we had the tests done, and a week later we met with Dr. Mohan to get the results. She was diagnosed with metopic craniosynostosis as well as a tethered spinal cord. Dr. Mohan felt that the cranio was more important to correct early than the spinal cord so he booked Zoey for surgery 10 days later. I was scared for Zoey to have the surgery but I knew it was necessary. I already knew she was a strong girl because of everything else she had been through. I think it was better to have the surgery so quickly because I didn’t have time to obsess over it, there was too much that needed to be done to prepare for it. Zoey, once again, did fabulous during surgery and recovery.
She had surgery on Thursday and was released Monday morning. She would have been released Sunday night but the doctors were not able to do there rounds until after 11pm and I opted to have her stay the night. She had the endoscopic surgery followed by about 7 months of helmet therapy. It only took 1 night wearing the helmet for her to get used to it. She rocked the helmet like she was born with it!! When she was finally able to stop wearing it, I kind of felt that she looked like she was missing something. It didn’t take long to get over that! When she was 2.5 months post op she had another surgery to release her tethered spinal cord. The tether was causing Zoey to develop scoliosis so it became an urgent matter that needed to be resolved. Since the surgery the curve in her spine has decreased and she is doing wonderful.
The last time we saw Dr. Mohan was 3 months ago and he said Zoey is the poster child for everything he does. It was a great feeling to know that the doctors think she is doing so well. As her mother I think she is flawless no matter what so I’m not the best judge of how she is developing. She is currently going through hip brace therapy because of hip subluxation and possibly needs surgery for that in about 6 months. People tell me all the time that they would never have guessed that anything was ever wrong with her, or that she was premature. We have been so blessed with amazing doctors and I can’t say enough about the care she was given at Maria Fareri Children’s Hospital in Westchester NY. I only included everything that she has been through incase anyone else has ever dealt with these birth defects as well as cranio.
Genetics has ruled out any chromosome abnormalities but there is talk that she has VATER association, no official diagnoses. I would love to know if any of these defects are connected or just coincidence, but so far no one knows.