I was an older Mother to be at 39, but was in great shape and had had no indication that anything would be wrong with my baby, Lydia. So, the day came, and Lydia was born and placed on my chest. She looked fine to me! But, then a few hours later, I got the news from the Neonatologist at Toledo Hospital (we lived in Toledo, Ohio at the time) that they suspected something was wrong with her head and they recommended x-rays.
My husband had left to go home and take care of our dogs and cats, thinking everything was fine, so I got the news by myself. I didn’t know what to think. I kept think, it was because her head got squashed coming out or something. They took the x-rays and said they could not tell what was going on, so they recommended a Cat Scan at a later date and sent us home. We came back for the Cat Scan and still they could not tell what was wrong exactly, so they sent us to U of M at Ann Arbor for a 3D Cat scan, and that finally confirmed that Lydia had BicoronalCraniosynostosis.
Next, we were sent to the Genetics department there and they referred us to the Craniofacial surgeon and Neurologist ..Dr. Buchmann and Murazsko.. Also, she was scheduled for a psych/developmental consultation and a visit with the pediatric neurophtalmologist. Developmentally, she was found to be pretty much ok and her optic discs were ok. Finally at 18 months, Cranial Vault Reshaping was performed. Lydia did not handle the Post op Pain well and her Heart Rate kept racing and she kept crying, so she was kept in ICU for 2 days and then went to a regular room for 3. It took 5 days for her eyes to open, until that time, she refused her formula (she was just angry), then finally one of her eyes cracked open, and she started eating cheerios.
Still refusing oral meds, she had to be given Tylenol suppositories for pain and she developed diarrhea from the Augmentin. At home, I woke up every 2 hours and turned her. I slept on an air mattress in her room. Keeping her from falling was very difficult, since she was a toddler and her swollen head, made her very unstable. Each time she fell, I would get very stressed. The following year, one of her “bumps” on the corner of her surgery kept draining, so they had to go back in and remove part of the plate on the one side. Finally, we got to the point that the surgeons were happy with how she was doing and told us, they didn’t need to see her for 2 years. Yay, we got a break! Well, then my husband found a job in Indianapolis last year.
So, we moved and have gotten established at Riley when U of M said it was time for a recheck…Riley performed a CT of her head and found the space between brain and skull to be very narrow, so we had her optic discs checked there. They were fine.
So the decision was made by Dr. Flores, the craniofacial surgeon and Dr. Boaz, the neurologist, to sit tight and recheck in 6 months, which will now be September. They recommended more genetic testing, since U of M only tested for a couple site mutations, not a panel. That test at U of M was inconclusive. So, we also just had a blood sample drawn a week ago to look for a genetic syndrome as a cause of Lydia’s craniofacial anomalies. We are waiting on the results. Dr. Flores and Dr. Weaver (genetics) feel she does have some sort of genetic syndrome, since her brow line is under developed and just her general appearance. So, we are waiting again for results and while we are waiting for Genetic testing results, I am writing down when she has head aches, which is becoming more frequent unfortunately, so I am afraid another craniofacial surgery will be in our future. Mean while, Lydia has done great in Kindergarten and has tested into the accelerated learning program for First grade in the fall. Now I am afraid that she will need another big surgery after school starts.