Category: Infantile Scoliosis

Erin’s Story

by | Oct 20, 2014 | Congenital Scoliosis, Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories

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

Josefina’s Story

by | Oct 6, 2014 | Buying Valuable Growth Time, Infantile Scoliosis, Infantile Scoliosis Blog, Our Stories

In January 2011, our daughter Josefina of 6 months old was diagnosed with severe progressive infantile scoliosis. We live in Montevideo, Uruguay; a country of 3 million people, where cases like Josefina´s practically don’t exist, so effective treatments in our country weren’t t available. At first, doctor recommended us to travel to Argentina, were we didn’t get good results using braces, so the possibility of successive surgeries were in our close future.

At the age of only 12 months Josefina’s scoliosis, was already twisted to 90°, compromising her lungs and heart. At that point she got a virus in her lungs and we ended up in the intensive care unit for almost two weeks with respiratory problems. Searching for the best option for her, knowing that it was very important and necessary to obtain the best possible correction to prevent future thoracic insufficiency syndrome, we came across ISOP and as we read about Mehta Casting, we knew immediately that it was the option we were looking for our little girl. Without hesitating we got in contact with Heather who gave us information and the support we needed to fight for being able to reach Mehta Casting treatment for our daughter.

With the advice and support of Heather we began searching for options. We knew it was going to be a long road but were determined to fight to give our girl the best option.

On august 2011 we began our applications to get Josefina accepted as a patient in Shriners Hospital for Children in Salt Lake City. We contacted local representatives from Shriners here in Montevideo and began making the applications to get her accepted as a patient in Shriners Hospitals. We found amazing people that helped us during this process knowing that this was the best option for my daughter and that she deserves to have this chance in life. Luckily, in September 2011 we received the best phone call in our entire lives, telling us that finally Josefina had been accepted as a patient in Shriners Hospital!!! That phone call changed our lives forever; we can’t express how good it feels to finally know that Josefina was going to have this opportunity, to know that we had achieved our best goal ever: Fight for the health of our lil Josefina giving her the best option for her condition.

In November 2011 we finally started this great journey, and travelled to Salt Lake City to have our first appointment with Dr. Jacques D´Astous at Shriners Hospital. He agreed that Jose was a good candidate for Mehta Casting and that in her case was the best option that will contribute to postpone corrective surgery until she got older. November 26th 2011 was the date when Josefina´s first Mehta Cast was applied and they managed to get a correction in her twisted spine of 40 degrees (her curve was 92 degrees before cast and the xrays in cast showed a curve of 52 degrees!). We were so happy for this great result and also seeing Josefina recovered so well, seeing her running around in her new cast!

Since November 2011, we´ve been travelling every 3 months to Shriners Hospital in Salt Lake City. Josefina is now 4 years old, she is wearing her 12th cast and is a healthy and happy girl. This alternative method to surgery, Mehta Cast, is allowing Josefina to grow older, with a good quality of life, buying valuable time and delaying surgery the more we can.

We would especially like to THANK  ISOP and Heather for giving us the information and support we needed. If it hasn´t been for her advocacy and work we would have probably never know about Mehta Cast. We also want to thank Salt Lake City Shriners Hospital´s staff. From the very first moment we felt really comfortable on how Dr D´Astous and his team treated our daughter, their professionalism and excellent reputation made us feel absolutely convinced that we were on the right track. Every single person that is in touch with our daughter while we are in the hospital is just WONDEFRUL. Starting with Dr D`Astous, excellent person and professional, always explaining to us how Josefina is doing and taking the time to answer questions about her future. His team is also great, and compromised with every little one, caring and explaining every step they do. We would also like to mention the excellent work Anaesthesiologists do, their professionalism keep us calm knowing she is in really good hands. Also nurses, psychologist, and all the staff in Shriners Salt Lake City are just amazing and caring with our lil Josefina, making each procedure the less traumatic for her. We felt really blessed to have this opportunity for her, knowing that we still have a long journey to go, but feeling confident that we are on the right path.

This is our family priority, to fight for Josefina´s health, giving her a good quality of life while going through this process. We are receiving the help of our family, aunts, uncles, grandparents, friends and our community. They are helping us afford the cost of travelling every 3 months and we are really thankful for that too

We still have a long way to go and Shriners Hospital is our main allied on this journey. This gives us strength and hope in Josefina`s future, knowing that she is receiving the best treatment ever, and that we couldn`t have given it to her if it wasn´t for the help of Shriners.

With love,

Mariana – Josefina’s mom

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