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Unicoronal Craniosynostosis
Lola Celeste Poole

We knew something was wrong with Lola's head very soon after she was born. In fact, my husband Jeff said he noticed in the hospital that it appeared to be kind of lopsided. But figuring most newborns have funny-looking heads, he just brushed it off.

However, a couple of weeks later I noticed her forehead appeared to be flat on one side. I mentioned it to Jeff, who said he'd noticed it too. We figured it was likely caused by the fact we'd been letting Lola sleep on her stomach and believed it would get better either when we started allowing her to sleep on her back or when she learned to roll over.

When Lola was about two months old though, I noticed her forehead seemed even flatter and again mentioned this to Jeff. He didn't seem too concerned at the time, but later that morning he called me from work and asked if I could get Lola in that afternoon to see the pediatrician.

I asked him why and he shared that he'd been doing some research on the Internet and had found some information that had led him to believe Lola had something called craniosynostosis, which I later learned is an early fusion of one or more of the sutures, or soft-spots, in the skull.

Immediately after getting off the phone with him, I called the pediatrician's office and got her an appointment for that afternoon.

While waiting for Jeff to get home from the office, I looked up craniosynostosis on the computer. I knew when I first saw the diagram from Children's Hospital of Wisconsin that Lola did indeed have this problem.

At first our pediatrician didn't seem too alarmed by our claims, but decided to order an X-ray just too be on the safe side. He looked at the film and said there might be a fused suture, but he wanted to hear from the radiologist before making an official diagnosis.

Just as we were about to leave our pediatrician told us the radiologist had confirmed that the left coronal suture, which runs from the middle of the skull down to the left ear, was fused. He said he'd be referring us to Children's Hospital in Birmingham.

Although both of us had suspected Lola did have a fused suture, Jeff and I were shocked to have our suspicions confirmed. In fact, we were kind of numb. We learned the next morning that we had an appointment scheduled at Children's; however, it was not for two months.

Because I researched relentlessly after Lola's diagnosis, I knew it was important we get her seen as soon as possible. I began calling the next day trying to get her an earlier appointment. The people at the plastic surgery clinic were so accommodating and managed to get her in to see the doctors within just 10 days after we saw her pediatrician.

When we first discovered Lola had this condition, which affects about 1 in 2,500 children, we were terrified, especially because we read online about babies who had multiple complications associated with craniosynostosis.

However, after meeting with Dr. John Grant III and Dr. Jay Wellons, who are wonderful by the way, we felt much better. Dr. Grant, an internationally-recognized pediatric craniofacial plastic surgeon, made us feel immediately at ease with his gentle bedside manner and the matter-of-fact way he responded to our questions and concerns.

Dr. Wellons, who is a neurosurgeon, also helped us to better understand Lola's condition and see that her case is unique to her and shouldn't be compared to other children who've also received this diagnosis.

Lola had her operation on April 29, 2009 at Children's Hospital in Birmingham. The image of the nurse carrying Lola down the hall to the operating room will never leave me. Lola was so calm as she quietly checked out the nurse's name badge. She never even looked back at me. It filled me with serenity to know she was going into surgery so calm.

It took almost six hours, which were grueling for us, to complete her surgery. We were so grateful that the doctors made sure we were kept informed throughout the surgery. There were no complications, so we were able to see Lola within a relatively short time after she came out of the O.R.

We were able to escort her to the pediatric intensive care unit (PICU) and stay with her for a while to make sure she was settled in safe and sound.

Lola stayed in the PICU for a little more than 24 hours, after which she was transferred to a regular room on the seventh floor. She received excellent care throughout her stay, and we continually encountered wonderful people whose sole goal was to make sure we were all well taken care of.

We'd expected for Lola to be hospitalized for five days, but because she'd done so well, she was released just three days after her surgery.

It's now been four months since her operation and Lola is doing great. She's handled her recovery like a champ, even the part when her eyes swelled completely shut.

Dr. Grant says we'll get to see him at least once a year until Lola is 18, so we're looking forward to enjoying a very long relationship with both him and Children's Hospital of Birmingham. I know we are in very capable and caring hands, and I am grateful to have such a wonderful hospital so close to home.
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