I know this is long overdue..
Knowing I was diagnosed with bicoronal craniosynostosis as an infant, I knew that there was a possibility of passing it to my children. I long pondered over having kids, and I made it a point to whoever I married, of what they were getting into. With that said... Mikayla came into the world on February 18,2003.
Labor was pretty tough. I was admitted to the hospital the night before with labor pains, then my water was broke at 8 am the next morning. I recieved pitocin around 9 am, then an epidural around 11 am. By 12:30 or so, I was finally fully dilated, and allowed to push. I pushed.. and pushed... pushed some more.. No luck. Around 4:30 pm, I was rushed into the ER for an emergency c-section. I was tired, and the baby was beginning to stress. Mikayla arrived 15 minutes later.
When the nurse brought her over, all goey and yucky, I noticed her head was mishapen. I wasn't surprised. The pediatrician on staff was awesome. Because we knew of this ahead of time, he had his staff research it, to be prepared. He checked her soft spots, she still had the one on top, but he wasn't able to move the plates, so that's how we got her first diagnosis.
Everything went smoothly during recovery. The nurses and staff would come in and ask a ton of questions. They weren't familiar with all of this. The pediatrician even had the radiologist come in and see her. By the time we left the hospital, we were armed with phone numbers and names for the surgeons at Children's Hospital in Detroit.
Her first visit with the reconstructive plastic surgeon was when she was only 3 weeks old. They took pictures, and did this at every visit. Next was to the neurosurgeon, the opthamologist, and the ENT over the next couple months. Mikayla was scheduled for surgery July 18, 2003. She would be exactly 5 months old. 3 weeks before the surgery, she went for a sleep study. Real fun for a 4 month old. Anyway, they discovered she had a mild form of sleep apnea, but they thought it would improve with the surgery. She had two CT scans. The first confirmed the diagnosis. She was fully bi coronal. The second was to see how she was progressing, and so the surgeons could make their decisions on how exactly they were going to make thier cuts. Her skull bones were actually pulling away from each other on the top to allow for growth.
Surgery day finally arrives. I was on an emotional roller coaster. I had all the faith in the world that the doctors and the hospital would take excellent care of her. It was the hardest thing in my life to hand over my baby girl. I remember sitting in the waiting room, with all these other parents, and just crying and crying. They must have thought I was crazy.
We received updated on her progress every couple hours. Some from the nurses, and once in a while from the doctors themselves. Eight and a half hours later, they were done. They had completely removed all the bones and reshaped them to a "normal" shape. They also created a brow bone and a bridge to her nose. About an hour and a half after that, I was finally able to see her. She was so beautiful. Then I cried. I cried because I had to put her through this. It felt like my fault, because I knew this was a consequence of having children. I cried, because I didn't like seeng her this way. She was asleep, but hooked up to all these machines, and wires.. They were also giving her blood, and she had drain tubes seeping fluid from her head. She hadn't started swelling yet.
Later that evening, she was opening her eyes and a little cranky. They kept her up on meds, and she was transported to the burn unit, where the staff would be able to offer the best care. I was not allowed to stay in the room that night, so we staying at the Ronald Mcdonald House right next door.
The next morning, we were up to see her. She had definately started to swell. Her surgeon came in to check on her. She also yelled at us for not staying in the room that night, even though we were told we couldn't stay. Anyway... Mikayla was taking down milk. She was doing very well, and only vomited a couple times. She was recovering comfortably. We stayed in the burn unit for one more night. The next morning, the swelling had peaked. They were able to remove the arterial line they had in her groin, since she was stable and eating well. With the arterial line removed, we were moved to NICU. The next day, her swelling was going down. She started to peek from one eye. They removed the bandages, and the drain tubes. The next evening, 4 days after surgery, her other eye began to open. She was beginning to behave normally again. My little girl was finally back to herself! She was dismissed the next day, yay! 5 days after surgery, 2 days earlier than expected!
She was so happy when we arrived back at home! She laughed and giggled and played. She slept near us for about the next week, in her pack n play. I don't think I slept a wink. She recovered nicely though, and she looked great!
2 weeks later, we started helmet therapy. It took a few tries to get the fit right, and she was not happy about it! She eventually got used to it though. We decorated it in her favorite stickers. It was such a relief to have "crash helmet" on her head. She was so clumsy, and I was so worried about her hurting herself. She wore the helmet for about 4 months.
Soo.. My little girl is now going to be 5 years old in a month. She goes to preschool and it so intelligent! She's so happy and is like any other 5 year old. Who doesn't love Hannah Montana?!?
Every now and then, we still get a little look, or an innocent question from someone unknowing. She's not perfectly molded, but she's perfect to me.
Oh yeah, just for anyone who doesn't already know. I am Katie's sister in law. She is married to my brother. That's how Dillon came along, and therefore, the birth of Craniokids.org. I give all the credit in the world to her for putting up this site. It was a courageous thing to do, and I can't believe how many parents and children this has helped.
front looking up.. notice the ridge on her forehead-she was not metopic at all, it was the plates spreading causing a ridge from the tissues being pushed outward.
here you can see the side of her head..
and this one shows the back so you can see how flat it is.. btw, this pic was just before surgery, you can see how much it progressed, she had surgery at 5 months.
and just after surgery to show they CAN fix it
and 5 months post op-and because it's cute, lol
here she is now! 5 and half years old.. you wouldnt think she had surgery!