Crouzon Support at AmeriFace

Faith's Story

Faith was born on April 29, 1989 after about actually sixteen ours of labor. She never would come down through the canal, so the doctor finally made the decision to do an emergency C-section. When they pulled her out they immediately found out that she had problems. They rushed her to the Neonatal Intensive Care unit, and quickly intubated her. (One note here, we found out later that they had originally given her an APGAR score of 2. When they went to intubate her, they quickly upgraded it to a 6, since they had to put the tube down her four times; she pulled it out three! We knew that she was a fighter then.;-) ) The doctor told us that she had gotten meconium pneumonia, since it was a C-section, and that she had things wrong with her because of the shape of her head.

Later we found out that he actually had all of the facts of her problems, the synostosis, the hydrocephelus, and the mid facial problems, but he didn't have a clue as to what to do about them.

After three weeks he just sent her home to us. We had noticed her apneatic spells in the hospital, and they just got worse at home. I worked with her though, and managed to teach her how to breathe through her mouth on demand when she would start turning blue. We almost lost her at two months, though, when an unknown infection in her bronchials stopped her breathing altogether. She went back into the hospital here, the same doctor cleared up the infection and sent her back home again, we assume to just die! He still didn't have a clue.

But, luckily the day we got her out, her pediatrician insisted we take her to Children's Hospital in Birmingham, in through the emergency room entrance. Well, after twenty four hours we had a lot more answers than previously. The different departments told us what they had found, and told us what all they could and would do in the next few years. They also kept her for two weeks trying to find a medicine that would help her breathing. From that visit they put her an a nasal steroid which helped trememdously. The poor child could finally lay flat when she slept!

At five months she had her first surgery. Her neurosurgeon, Dr. Patricia Aronin, opened the back of her head, widening it out so the skull could grow back normally. Of course her parting words to us were to lay her on her back now, so the skull would flatten out properly. Nope, Faith now discovered she could lay on her stomach as well and still breathe, so we had a running battle with her to lay on her back!;-)

At a year and a half old, Faith's front part of the head had fused as well, and Dr. Aronin went back in and opened it,advanced her upper eye sockets, as well as taking care of a tiny leak that she'd had after the first surgery. When Faith was two, they finally decided to put a shunt in her head to relieve the hydrocephalus. She'd been on medicine until then, but it has a tendency to make the upper body weak, thus they put the shunt in.

After Faith turned three, though, her eyes weren't shutting properly when she slept, so they decided to do the craniofacial advancement at age three and a half. It turned out to be a long, long surgery since Dr. Aronin suddenly decided to rearrange her forehead while they were in there, and it turned into a twelve hour surgery. Faith stayed under anesthesia for six days, spent four more in the hospital, and went home. However, after a week at home, her shunt popped out due to the lack of give in her skin on her head. So we rushed her back to the hospital, and Dr. Aronin removed it in the ER. She spent another week with the doctors monitoring her spinal fluid level, and they decided not to replace it right then, since she'd already been through a lot, and it seemed to level out. Then the day after she got home from that, she had a grand mal seizure from the stress, so yep! back to the hospital. That was one long October!

The only surgery she had the next year and a half was for ear tubes, and we thought everything was going great. I had gotten pregnant with her little brother then, and all seemed okay for a while. Well that June after I had him, Faith was walking away from me while I was in the pool, and I saw to my horror that her spine was crooked. When washing her in the bath, I had never noticed it, since she usually faced me, or sat sideways. Her pediatrician was also appalled, but he too, always checked her out from the front or side. So we got her to an orthopedic doctor in Birmingham, and he told us that her hydrocephalus had most probably gotten out of control due to having no shunt in. Well after an MRI and a visit with her new neurosurgeion, Dr. Lewis Harris (Dr. Aronin had since moved to Detroit, to Children's Hospital there), he concurred, so they put a new shunt in her head hoping that that would alleviate the pressure in the back. But, after about three months they realized otherwise, and put a shunt in her back, as well as opening up the top one or two bones in her spine, putting a spacer in them to widen them. Faith spent her first year in kindergarden, but it was a rough one.

Her sleep apnea had gotten extremely severe and she wasn't sleeping very well at night. So just before school was out that year, she had a tonsillectomy and adenoidectomy. Which was a great help. Her tonsils had been so big, they met at the back of the throat. Quite often before the surgery, she would toss up every third meal or so, simply because her tonsils had been tickled wrong!

Six months later another unpleasant surprise hit us. We had been noticing that she didn't always respond when we called her, even if she was just sitting across the room. Well she suddenly had another grand mal seizure, from way out of the blue!, and after spending the weekend in the hospital, the doctors informed us that she was most likely epileptic now, as well. So now she has to take anti-seizure medicine everyday.

Faith wore her back brace for the scoliosis for four years, and finally at age eight and a half the doctor said we had to do surgery. Her curvature had gotten to the sixty degree mark, and her energy level was almost bottomed out. We went to Disney World just after he told us about the imminent surgery, and had to rent her a wheelchair just so she could last around the parks. When December of '97 came, she had the surgery to alleviate her scoliosis. It too was a long twelve hour surgery. And she spent the rest of the month at home with her Dad.

She is doing well right now, though a little shyness with her peers has set in, due to some teasing from after school playmates, and due to her preteen age. We'll be working on her self image in the next few years, and keeping our fingers crossed in regards to her next surgeries. The doctors have told us that she will need orthodontic surgery in the next couple of years, and the final facial advancement probably when she is about fifteen. They also have said that she may need more back surgery, since she had to have this one so early. And with shunts you never know when one may go bad, so we'll be looking out for that. But, Faith has been a real trooper during all of this, especially the last few years, since she understands better about why she has to have these surgeries.

Faith is very intelligent in some things, she is almost a savant in remembering things about people she has met. She like her parents has a problem with math, but she is where she should be on most subjects going into third grade. We have a lot of fun with her, you never know what she will say. Her brother is probably her best friend, and she loves him very much. She is good with him, being a little mother to him more than he can stand sometimes!:-) She loves little children, especially babies, so we foresee at this time a possible career for her with children. But, she has surprised us more than once.:-) We welcome all questions, and would love to hear from others.

Thanks, Kim and John Benton