Our son, Jacob was born August 2014. From 20 weeks gestation we were aware that he was going to be a single umbilical artery baby, so we were closely monitored for any heart or kidney issues and had monthly ultrasounds to keep track of his growth. Later in the pregnancy, we were told his head was measuring “small”, but no indication as to why and that we would just keep track of it. At 39 weeks 4 days during one of our weekly non stress tests, his little heart rate seemed to ‘dip’ during a contraction. We were sent to triage and it was determined after further monitoring that I would need to be induced. Jacob being my third baby (20 years apart) and with the first two both being natural unmedicated labor and deliveries, I was terrified of being given medications to bring on labor…but Jacob was becoming distressed and we accepted that this was what was necessary for him to be safe and healthy. Jacob was born the following morning after 12 hours of active labor. He was perfect, but I did notice his head shape seemed cone-like and somewhat ridge-like in the forehead region. No one mentioned that anything seemed terribly abnormal or worrisome.
That night Jacob spent the night with me. I kept calling the nurse to let her know he seemed “stuffy” like he was having trouble clearing some secretions from his nose while nursing, but I was told this was normal congestion from the birth. He was checked by the resident pediatrician and all of the other neonatal doctors and they all told us he looked good. It was only until a new CCHD exam (testing done in the state of NY) for congestive heart disease was done, that we got the news that would rock our world. Jacob was connected to a device called a pulseoximeter in order to measure is oxygen levels. The purpose was to identify any underlying heart disease which would be detected by oxygen levels below 95%. Jacob’s levels were bouncing between 88-92%, abnormal. As we were packing for our ride home the nurse came in to tell us, Jacob was to be taken to the NICU. It was only after his oxygen issues were detected that his craniosynostosis was also identified. Words like “metopic suture” and “fused” were explained to us. A battery of tests were done to determine if he in fact did have any heart or lung abnormalities. Genetic testing was done. EKGs, echocardiograms, CT scans, blood tests and supplemental oxygen were part of our daily life for our 18 days in the NICU. Breastfeeding meant practically living at the hospital to be on-demand and the strain of the uncertainty about his health was one of the most frightening things of our lives. During our stay a neurosurgeon, Dr. Ghattan was brought in to explain to us that Jacob would need surgery for his metopic craniosynostosis. We liked him right away as he did not talk down to us, he explained everything and gave us options and approaches. He also answered our questions no matter how silly. Dr. Ghattan explained that Jacob’s synostosis did not look syndromic and that the surgery he performs is minimally-invasive using an endoscopic approach. He explained that the reason he does the minimally-invasive surgeries was to allow the brain the space it needs to grow and to reduce surgery and recovery time. Jacob’s would have the surgery at 8-12 weeks old before any intracranial pressure could build-up and he would only be in the hospital for one day. For us, this seemed like a much safer and less traumatic surgery than the more lengthy cranial-vault surgery, and so we opted to have this surgery done as it seemed to be the least traumatic and risky for our little boy.
We were discharged with oxygen and no diagnosis for Jacob’s breathing issues and scheduled his craniectomy at 10 weeks old at Beth Israel. The morning of the surgery we were terribly worried. I think the worst part for me as a mom was going into the operating room and seeing him get the first dose of gas before the rest of the anesthesia medications were given to him. It was only until I was called to go to him after the surgery (two hours later) to comfort him that I felt some relief. Dr. Ghattan told us babies after this surgery often don’t need pain medication if they are breastfed as the breastfeeding acts to calm them and ease any pain, and he was right. As soon as I started to feed him he stopped crying and was very calm. We had a music therapist come in with an ocean drum to help him as well which was absolutely wonderful. We had a wonderful care package as well from Cranio Care Bears which made us feel like we had a warm hug surrounding us. My husband cried when he opened it and read the prayer chain. It really meant the world to us. A little over a month later Jacob started helmet therapy. We went home the next day with a prescription for iron as he was a bit anemic, but did not need a transfusion and tylenol for pain.
As I write this, Jacob is a very active seven month old. He is crawling, sitting up and pulling himself up to stand. He is a few months into helmet therapy and we are definitely seeing his head-shape change. He also has been monitored by a pulmonologist at NY Presbyterian who ordered a sleep study for him and found that he suffers from sleep apnea. So far his apnea as greatly improved and we are almost completely off of supplemental oxygen. Jacob has been our little mystery with all of his health issues, but a great joy. We can’t wait until ALL of this is behind us and we can look back on these months as a distant memory. My advice to any moms dealing with a child going through any health issue is to do your research, be as informed as possible, ask questions and make the best decision that you can. Trust your heart and your instincts and be persistent if you feel something is not right.