Teeter's Story

 

We met with Dr. Kalus and got found out more about Apert. We had met a geneticist in NICU who had counseled us and gave us several of the articles from Clinics in Plastic Surgery (April 1991). He told us of a group of physicians he was involved with - the South Carolina Center for Craniofacial Anomalies. The group met periodically and Lizzie would be seen by every specialist, then the group would meet and form a plan for her. It was too good to be true! The group is wonderful, and we see them at least every year.

The goal was to get Lizzie to ten pounds prior to the surgery to release her fused cranium. We tried, and she tried, but she had developed a terrible stomach problem, frequently not able to keep even the mildest formula down. We tried every formula available, but when time for surgery came she was still only about 9 1/2 pounds. Dr. Kalus said she would do just fine. She was hospitalized the night before surgery, and we were more than a little nervous. Something did not feel right. The feeling persisted right up through the time in surgical waiting when the anesthesiologist came in to talk to us. Then Dr. Kalus came in, and said there would be no surgery that day - a special tool he had ordered for the surgery had not arrived. While we were frustrated, we were also both extremely relieved.

We took the opportunity to try and get her stomach problems straightened out once and for all. Her gastroenterologist was able to run some tests on her and determined that the problem could be treated by some extremely heavy duty antibiotics. They did their job, and finally she was able to keep formula down, and gained a little weight.

I lost count of the visits to various doctors during the first six months.

The surgery was rescheduled, and Lizzie was doing much better, and this time everything felt right. Although the surgery lasted all day long, the operating room kept us informed of her progress. She did pretty well in recovery. The poor thing was swollen and pasty looking, her head in a turban. Dr. Kalus was very pleased, saying everything had gone even better than expected. Dr. Kalus had done the work jointly with Dr. Lenwood Smith, Lizzie's regular neurosurgeon.

They had told us she would probably be black and blue, stay swollen, and run a fever, and be in the hospital for 10 days to two weeks. But after only six days, she was ready to go home - no bruises, no fever. She is one tough kid. When the bandages came off, her bone structure was so different than what we were used to - and they told us it would take some time for us to get used to it, and also for the swelling to go down. Both were true. After a couple of weeks, everything settled down and she had the smoothest forehead, and very graceful temples. She was more beautiful than ever.

Summer quickly turned to fall, and we noticed a remarkable increase in her personality after surgery. Maybe it was releasing the brain and giving it room to grow, or maybe it was the curing of her stomach problems, but she was so happy now and into everything. She would move herself around by lying on her back, and propelled herself like an inch worm using the back of her head.

By Thanksgiving, we began to worry about a bulging which was growing in the center of her forehead. It was so gradual we really did not notice it. Grandparents and others began to point it out to us. The soft spots in the top of her head left during surgery had filled in with bone, which we assumed was normal. Just to be on the safe side, we scheduled an appointment with the neurosurgeon. His news was not good.

The "bone" which had filled in was not bone, but felt as hard as bone. Her poor head was pressurized to the point where the brain was being pressed into all the soft spots, and had literally dissolved the new forehead from the inside, and was now pushing through making the bulge. The shunt had failed, probably due to the growth activity after the cranial surgery. There was no option - surgery was scheduled right away, and the shunt was replaced.

Now, of course, the cranial surgery would have to be redone to repair the damage done by the pressure to the forehead. That surgery was scheduled for February. The forehead was replaced, and the shunt once again failed - but this time everyone was waiting for it to happen, so it was caught before too much damage was done. Elizabeth still has a bulge in her forehead, but the cycle has stopped for now and no further cranial surgery is planned at this time.

So now, she has had three shunts and two cranial surgeries. It was time to start on her hands in 1993. We consulted with not only Dr. Kalus but also the Shriner's Hospital in Greenville. If you don't know the Shriners, make it a point to get to know them. They handle any case where the child is 18 or younger and has walking or any kind of mobility disability, or is burned. Every dollar of funds raised by the Shriners goes into an endowment fund, and they operate 22 orthopedic hospitals and three burn centers around the US from the interest on the endowment fund. No child or parent is ever asked to pay a dime for services. All of the props the Shriners use in their fund raising are paid for directly by the individual Shriners - funds raised are not touched for any reason.

We also consulted with a local physician who later became famous with a groundbreaking procedure for lengthening bone called illizerov (sp?) in which he wanted to separate Elizabeth's fingers by threading metal rods through her bones, and applying gradual pressure to encourage the separation of the fingers prior to traditional surgery. Dr. Kalus tactfully advised against this procedure, and we agreed. We did not want Elizabeth to be the guinea pig. The procedure would have been painful, and there would have been a significant risk of infection.

Teeter had her first hand surgery in July of 1993, releasing the index and pinkie fingers of her right hand. She had skin for grafts taken from the area where the leg meets the torso. The only problem we had was after surgery - by now she was so active she pulled apart the incision where they had taken the skin, and Dr. Kalus had to meet us at the emergency room to put her back together. The second hand surgery, the same procedure on the left hand, came that October, along with the repair of a double congenital hernia.

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