Gina’s Story

Gina our third child was born full term. Everything was fine during pregnancy and delivery. There was only one thing we noticed right away; a slight asymmetry of her face. We asked the doctors if it was normal, and  we were assured that it was only due to pressure going through the birth canal. They said it would go away in a few days. We were relieved and didn’t think much of it.

Picture 1. Newborn Gina

Throughout the following months we kept an eye on Gina’s head. The asymmetry we noticed did not seem to go away. The left side of her forehead was somewhat flat, while the other side was bulging. Her nose looked a little crooked and her left eye was slightly higher than the right one. We also noticed that she tended to tilt her head to the right. We made it a point to ask about this whenever we visited our pediatrician. The answer we have gotten consistently was that this was due to the way she was positioned in the womb and the birth itself. We were reassured that it would go away.

Picture 2. Gina after her baptism 

As weeks and months went by Gina’s unique features became more pronounced. Not only were all previously observed signs present, but we started noticing others. At some point we realized that her left eye socket had shifted so much and her forehead was so flat that she was unable to close her left eye while asleep. However she was developing normally and since her doctor was not worried, neither were we.

   Picture 3. Gina 2 months old                                                                       Picture 4. Gina 4 months old

When Gina was nine months old we had to take her to the pediatrician to have her ears checked. As soon as the doctor laid eyes on her he started looking at her head and examining her soft spot. This went on for a while, then finally he asked us if we noticed that Gina’s head grew a lot during the five weeks since our last visit. We did not notice. They measured her head circumference and plotted the result. All of her previous measurements plotted neatly along the fifty percentile line. The new measurement was over the ninety percentile. The doctor told us that he wanted to see her back in two weeks to repeat the measurement.

Pictures 5. and 6. Gina at the time of diagnosis (9 months). Note her severely angled eye line and head shape. Also, she noticeably tilts her head (picture on left). On the right, Gina’s forehead shape can be observed. The left side is flat, while the right side is bulging out.

Even though we had scarce little information to go on, we were immediately concerned. We started researching on the Internet for anything that could cause sudden head growth. All of the potential causes were scary. Naturally we suspected that Gina’s facial asymmetry might have something to do with it. So we also searched for keywords describing her condition. That’s when we happened upon and read Kaitlyn’s story. The moment we saw her baby pictures we knew her condition and Gina’s must be one and the same. Kaitlyn had Unilateral Coronal Synostosis and as it later turned out so did Gina.

That night and the following morning we pretty much read everything one can find about Craniosynostosis. We learned that the only known treatment was surgical. We also concluded that in most cases the ideal time to perform the surgery was between 6 and 12 months of age. Now we were really worried thinking that perhaps Gina will miss the ideal timeframe. She was well into nine months at the time. As it turned out Children’s Hospital in Birmingham Alabama had a department that specialized in craniofacial surgery. We contacted our pediatrician the next day and asked him to help us get an appointment with a specialist as soon as possible. We explained what our suspicion was hoping that he would share our concern.

A week later we were in Birmingham meeting with Dr. Jeffrey Blount assistant professor at Pediatric Neurosurgery Department at Children’s Hospital. My husband and I decided not to mention what condition we suspected Gina had on the off chance that it might bias the diagnosis. Our referral only specified unusual head growth. Right after introductions Dr. Blount looked at Gina and to our amazement told us that she had Unilateral Coronal Synostosis. He ordered a CAT scan and complete set of skull X-rays in order to confirm his diagnosis, as well as to rule out any secondary issues that may have caused the sudden head growth. When the results came back we were very relieved that he found no evidence of abnormal fluid in or around the brain. The conclusion was that it was simply caused by a naturally occurring growth spurt. They assured us that the timing for Gina’s surgery was ideal and they scheduled it two months later. We spent the next two months preparing for the surgery. We are truly blessed to have so many relatives and friends who offered help.

 Picture 7. Gina with Mom before surgery.

We had to arrive at 5:30AM at the hospital on the day of the surgery. After the usual preparations, during which Gina fell asleep, she was taken into the operating room by one of the nurses. We were grateful for the fact that she slept through this because otherwise she would have been screaming when separated from us. We spent the rest of the time in the waiting room. Every hour or so, either the doctors or a nurse called us to give us updates. The surgery lasted for eight long hours. Later, when we had a chance to speak with the doctors, they explained that the bones of her skull were more deformed than expected from the CAT scan and radiograms, so they had to spend more time re-shaping them. We were allowed to take a quick peek at Gina as she was wheeled into the Pediatric Intensive Care Unit (PICU). She looked like a little angel with stitches across her head. Her face was noticeably different but we saw no swelling. This was encouraging, or so we thought at the time.

Pictures 8. and 9. Gina minutes after surgery.

We expected the first night to be uneventful and Gina to remain sedated throughout the night. My husband drove home to put our older daughter and son to bed. We agreed that he would spend the night at home and bring a few things the next day. Unfortunately, that first night turned out quite different from what we assumed. Gina awoke within an hour of being moved into PICU. When I was allowed to go in she was already awake and crying. I tried to give her some Pedialyte but she could not hold it down. A little while later I tried again, this time with more success. She was in a bad mood, obviously in pain, in spite of the pain medication given to her. I tried all I could to console her, but it was a struggle. She wanted to nurse but I was told not to nurse her yet, so she was very unhappy. Around midnight they let me give her breast milk from a bottle. She drank it all and finally fell asleep. Visitation time was over so I had to leave PICU until 8:30AM next morning. I later found out that Gina drank all six bottles of breast milk I had pumped earlier. The nurses were scrambling to find something that she would drink to prevent dehydration and, as an added side benefit, it also calmed her down. In hindsight it would’ve been better to have both of us there (my husband and I) in the PICU because there was no way I could rest and was very exhausted by morning.

Picture 10. Gina in PICU next morning

The next day I spent either in the PICU (during visitation) or in the waiting room. While I was in there with her, Gina would not stay calm unless latched on. It was not so much about feeding than finding comfort in suckling. My husband arrived around 11:00AM which gave me relief to get something to eat and gather some strength. He drove back home later that afternoon and we agreed he would stay with the children that night again. Gina and I were not moved into a private room until 9:00PM that night. I was close to the breaking point by then. I really needed some sleep.

To my surprise my husband showed up at midnight. He said everything was going well at home, the kids were having fun with the Grandparents. He watched Gina the rest of the night while I finally had some much needed sleep. The next two days were pretty much the same pattern, except Gina’s face and head started showing progressive swelling. By the third day it has gotten so bad, she could barely open her eyes. For some reason we thought that swelling would be there right after surgery, and since there was none at that time, we sort of expected that she would not have swelling. We now know that it is only after about 48 hours when the swelling starts and it peaks around 3-4 days. At its worse, our little angel’s head looked like a balloon with her eyes completely shut and discolored. She looked miserable and we were desperate because there was nothing we could do to help but wait. She cried a lot and was especially bothered by the constant ”pestering” of hospital staff. Every hour or so, someone would come in and take blood, measure temperature, check vital signs, etc. She was deathly afraid and suspicions of anyone entering the room at this point and burst out screaming every time. Managing her head drain tube was very difficult. The little bottle and tube seemed to get caught all the time. In summary, these few days were extremely trying for all of us.

Pictures 11. and 12. Swelling is visible on Gina’s face, especially her eyes. The swelling had gotten worse later.

Picture 13. Gina just before being released on Friday.

By Friday afternoon her condition improved so much that the doctors let us go home. We are pretty sure Gina was relieved to be home, and so were we. It’s not that the hospital staff did not do a good job, they did. But there is no substitute for home. Gina’s demeanor changed immediately as she recognized the familiar environment. Her room, her toys, her little world. She acted as her old self again and was ecstatic about seeing her siblings. Nights however, continued to be difficult for about a month. She would wake up crying many times a night, so we tried putting a night light in her room. We speculated that the room being dark she may not know if she was at home or still in the hospital when she woke. The light seemed to help and she slowly returned to normal sleeping patterns.

Pictures 14. and 15. Finally at home Friday afternoon!

She is doing extremely well now. It’s hard to tell that she had surgery six weeks ago. We just had her follow up visit at the hospital and the doctors were very pleased with the results. We are scheduled to go back in six months. Until then, we have our work cut out for us… Gina is learning to walk.

Picture 16. Gina is 1 year old!                                                                      Picture 17. She likes to help out in the kitchen.

Finally, we would like to express our eternal gratitude to the outstanding team at Children’s Hospital in Birmingham, Alabama. Their expertise, professionalism and compassion has made an immense difference in our lives, and changed Gina’s for the better forever.

Gina’s Family