Scoliosis is tough... But, our kids are tougher.

 

Erin's Story

Erin was born on February 2, 2002. It would have been her Maternal Great Grandmother's 95th birthday, and Erin was the first girl on the paternal side of the family in 90 years!

At approximately 37-38 weeks, I had an ultrasound to make sure things were on track. There was a question raised from that ultrasound as to whether or not the baby had both of his/her kidneys. I was instructed to mention this to the L&D nurses after the birth of the child. We did not know until the birth whether it was a boy or a girl.

I was induced on Feb 1 at about 10:45 pm. This was due to my blood pressure going up and the baby was due on the 2nd anyway. L&D went fine, although the epidural was a waste of time - again. The same thing had happened with the birth of my son.

When Erin entered the world, and Dr. Lee announced "IT'S A GIRL!" John, my husband, said "Are you SURE?" Yeah, they were sure! After a few minutes of cuddling, the nurses took her to be weighed, measured and cleaned up. They all knew there was a question of a missing kidney, so while the nurse was cleaning her up, she said "She's peeing!" What great news.

The next day, after an uneventful night, Erin was whisked away for an ultrasound. This confirmed, that in fact, she did only have one kidney. When they brought her back, I was filling out all the paperwork about lead, and hearing etc. The nurse said that even though we didn't fall into the criteria for the newborn hearing test screening, we should probably have it done since kidneys, ears etc all form at the same time. We did and her hearing was fine.

At her 3 month checkup, her pediatrician noticed that her head would tilt to the right, he suspected torticollis, but wanted to wait till the 4 month check up because babies have such wobbly heads to begin with. At 4 months it was confirmed. Erin also had hip xrays because there was concern that her hips were not in alignment because one leg appeared longer than the other. Her hips were fine.

We started physical therapy for the torticollis, and when Erin was about a year old, her PT was rubbing her back and thought she felt a curvature of the spine. After xrays, we went to an Orthopedist who confirmed that Erin had congenital Scoliosis with hemivertabrae. After hearing the diagnosis, we switched orthos to Dr. Alvin Crawford (Dr. C), department head of the Ortho dept. at Cincinnati Children's Hospital Medical Center (CCHMC). For about a year, we did the wait and see with xrays every 4-6 months. Erin was also seen by the Human Genetics dr, but it was discovered that none of this could be tied to Genetics. Dr. C also said Erin had Klippel Feil Syndrome, which is characterized by a low hairline and shortened cervical vertebrae.

When Erin was 2, Dr.C decided to put her in a Modified TLSO brace with Cervical Head Collar. this was not to help her spine, it was to stop the facial dysplacia that was occurring due to the torticollis. During this time, Dr. C explained what our options would most likely be: fusion, rods, or a new procedure that was still in clinical trials, the Vertical Expandable Prosthetic Titanium Rib or VEPTR. At this point we also discovered that Erin had fused ribs.

John and I were not thrilled with the idea of fusion and rods seemed so old fashioned. So I began trying to find out anything and everything that I could about the VEPTR. I found out that one of the trial sites was Boston's Children's Hospital. So I made a few phone calls and got Erin an appointment with Dr. John Emans. She and I flew to Boston with all her xrays and scans and met Dr. Emans in May of 2004. Based on what I had, Erin was not a candidate for the trials. But Dr. Emans did say he wanted to see her again if we ever visited (my family lives in Massachusetts).

When we returned, Dr. C was glad I had checked it out, but we were still looking for the best option for Erin. In 2004, Dr. C presented her case to three (3) different symposiums in different parts of the country to get other suggestions, advice, recommendations. In September 2004, the VEPTR was approved by the FDA!!!

In January of 2005, Erin had another 3-D CT scan. This one, Dr. C sent to Dr. Robert Campbell, co-creator of the VEPTR in San Antonio, TX. Dr. Campbell got back with Dr. C and said Erin would be a "picture perfect" candidate for the VEPTR, and would be perfect to be the first patient to receive it at CCHMC!!

On March 14, 2005, while I was on a cruise ship heading to Cozumel, Dr. C's office called with the news that Dr. Campbell would be in town on March 22 to do Erin's surgery!! John said yes - and did try to reach me on the ship to no avail. When I got back to my sister's in Tampa, there was a message for me to call home. I was absolutely shocked when John told me the news. I flew home and spent the next week getting things set up for Erin's surgery - having pre-op work done, getting coverage for me at work, finding someone to watch Patrick etc.

Everything worked out and Erin had her surgery and she came through it with flying colors!!! Protocol says the child will be on a ventilator for a day or two - Erin came out of surgery off the vent. . Protocol says the child will be in the hospital for 14 days or so, but we were only there 10. She was in PICU for 2 days then on the regular floor for 8 more. She was also a celebrity as the Cincinnati Enquirer did an article on her and we posted it on her door.

Her recovery has been great and it is amazing how tall and straight she stands. She will have to have expansion surgery every 4-6 months, but that should go just as well as the initial surgery. She is not able to play contact sports, but if you saw her on the playground with her friends, you would never know that she has had spinal surgery!
Gail

Erin

 

 
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