Hi, my name is Teresa and this is my story about my son Julian, diagnosed with Craniosynostosis in 2011. My husband John and I were blessed when our son Julian was born in March of 2011. Julian was born a week early (scheduled) due to my difficulty of sciatica on my left side from the pregnancy but was born a healthy 8 pounds 9 ounces. Throughout the first weeks at home, I noticed his head was more pointed then I remembered with my girls at that age. When I would have him on the changing table, he would never keep his head looking forward; it would lean to one side or the other. At his 1 month check up, our pediatrician noticed right away that something was not normal about the shape of his head and immediately ordered an x-ray that same day. I am grateful for his assertiveness and right away he put in for a referral to see a specialist in San Francisco.
We were referred to the Pediatric Neurological team at UC San Francisco, one of highest rated hospitals for these types of conditions in children so we knew we would be in excellent hands. We met with Dr. Nalin Gupta who after briefly looking over the X-ray’s and examining Julian’s head structure said Julian is diagnosed with Craniosynostosis of the Sagittal and surgery is our best option to correct his head. The surgery was dated for when Julian was a little over 6 months old (late September) but we would meet with Dr. Gupta prior for a re-check and the start of the pre-op process. When we met the second time, we also met with our plastic surgeon as well, Dr. William Hoffman who teams with Dr. Gupta during these types of surgeries on children. When they rechecked Julian’s circumference of his head, both the front and back parts of his head was growing more abnormal and his measurements were showing it was faster than expected so they moved his surgery to September 7th, almost 3 ½ weeks ahead of schedule which was a bit scary.
Surgery date came quickly and we were ready. We live about 2 ½ hours from the hospital, so we packed for 5 days that we were told we would be in the hospital for. We had about a half an hour with him before we said our goodbyes. A team of doctors came in, explained what the process was for putting him under and Dr. Gupta came in as well. I held Julian until the last moment and made sure to ask the anesthesiologist team to please sing his favorite song while they put him asleep. It was the hardest moment to watch him being taken through the double doors dressed in a hospital gown and a black pen marking on his forehead to identify whose patient he belonged to. The next 5 ½ hours, John and I waited and Julian was finally in recovery. For the next 4 days, we were by Julian’s side 24 hours as he went through the difficult process of healing. He was not able to open his eyes the whole time in the hospital and he had ups and downs throughout the recovery process. I think what got John and I through those difficult days was the wonderful care and love from the nurses and doctors that saw him. The doctor’s took his head bandage off on the 4th day and it would be the first time I would get to hold him. We were able to go home that day and the long car drive was very difficult but we made it! Julian was showing amazing improvement throughout the following weeks and we could feel more at ease that the surgery was a success and we could move forward.
It has been almost a year now since his surgery and we have an up and down time. Physically he looks great and he has hit all his milestones on a good timeframe which is very positive. He will have hard days where it is evident that his head hurts or he is in pain, he rubs the back of his head or his face and forehead becomes slightly discolored and swollen. We have padded our house from any possible bumps on the face or head but since Julian started walking there is only so much protection that can be done. We get through the hard days with his pain and discomfort patiently and we continue to have faith that his hard days will be less and less as he gets older. For now, his surgeon has ordered a CT scan in September after the 1 year mark of his surgery to make sure nothing is compromising his recovery and growth due to his continuing of headache/pains that he seems to have a lot still.
My best advice for parents that are about to go through this with their child is to bring a favorite music toy or something that is familiar to them that they can hear since they may not be able to open their eyes for at least the first 2 two days or so. We have this bee that played music which hung in Julian’s play gym that we brought to the hospital and we would play it for him all the time and we could see how comforting it was for him as well as a favorite hippo that he could touch and feel. If you’re a nursing mother, bring everything for pumping and storage bags including your own bottles since to actually nurse the first day or 2 may be too difficult. Our hospital had a whole refrigerator to accommodate for breast milk storage and the nurses were supporting to use that if you request it. When we got home, a Boppy Lounger worked best for us to use in the crib for Julian. We padded his crib with sheets and blankets to keep it safe for him as well as elevated like he was in the hospital. The more elevating you can do for your child the easier it is for the swelling and healing process to happen once they are home.
I want to thank the Cranio Care Bears group for such a wonderful level of support, kindness and generosity. To reach out individually to each family during a difficult time is a validation of true compassion towards others which is what the Cranio Care Bears demonstrates to so many families. It is nice to know as parents, we are not alone and many prayers and thoughts are there to carry you through a difficult journey of your child’s life.