Joan is very much like me..a strong advocate for her son's healthcare. There is no wrath....just love.
And she has been a wonderful support system for me through the last couple of years. Although we met through the CAST support group through ISOP we now keep up with one another through emails, Facebook and calling each other for support.
Read about Hayden's journey with Progressive Infantile Scoliosis. And learn why it is SO important for for this to be caught early!
Hayden’s Story
When my son was born, I had to have an emergency C section. So when I woke up from the anesthesia, he was already in the nursery. My husband was standing over me and I asked where my baby was. He was silent, which was extremely scary. Then he told me that he was in NICU because he had very high levels of billiruben (he was Jaundice). He stayed in the NICU under 5 banks of lights for 6 days, and during that time they found a heart murmur that they thought he would outgrow.
The next year and a half we went to regular checkups at the Cardiologist and found out he had a heart defect, Mitral Valve Stenonis. The only way to repair this defect would be open heart surgery, but we thought that we could wait until he was older and stronger and “deal” with it then. So on we went with life. Then one day during his 18 month well check, I mentioned to the Pediatrician that Hayden wasnt’ walking or standing straight. She looked at his spine and thought it looked straight, but ordered xrays just in case.
We found out that he had about a 36 degree curvature of the spine. So we were sent to Scottish Rite Hospital in the next few weeks for evaluation. The Orthopedist felt like we should “watch and wait” to see if the curve progressed. He said he had seen cases of curves that would correct on there own and didn’t want to “jump the gun” yet. But in the meantime we needed to do an MRI to rule out any other defects or tumors. We found out that Hayden had a Tethered Cord at the base of his spinal cord which needed to be released or it could cause serious nerve damage and also not help in the correction of the spine. So the next few months were visits to the Neurosugeon at Childrens Medical Center, more MRI’s and then surgery to release the cord. We were to wait a few months after the surgery to see if the curvature corrected. Well of course it did NOT and the curve was up to 62 degrees and Hayden had a severe rib hump (rotation of the spine).
NOW, the Ortho was ready to cast him, but Hayden was almost 3 (in two months). So we casted and casted and didn’t get the correction we were hoping for. The Dr wanted to stop but we wanted to keep trying. Then after 8 months we removed the cast because the Dr felt like it was just holding the curve and a brace could do the same. So now he is in a brace 23 hours a day, and although our Dr doesn’t like to talk about numbers, Hayden is probably around a 40 degree curve and the rotation of his spine is very minimal. Of course he will need surgery when he is 9 or10, and will probably have one or two more series of casts until then, but he is a happy, functioning, active little boy. He loves cars, and soccer, and video games and loves preschool. His sister Hayle adores him and worries about her brother so much. He is loving and sweet but still rough and tough like most boys his age. He is so funny and has a great attitude. He has some anxiety issues due to the hospital visits and stays, but we are working with him and he is doing great.
We are still dealing with his heart defect and hopefully can wait a year or two before surgery. I wanted to tell his story to make people aware that if you notice a curve whether it is slight or severe in your baby, DO NOT WAIT because I believe if we discovered it a year sooner, Hayden would not have it today.
If you should have questions about Hayden's story you can contact his mom, Joan, at hayro1611@yahoo.com
1 comment:
Hi there! We have similiar stories..my little girl was seen by an ortho at 2 years who said she was OK..but she was not. She was finally diagnosed with progressive I.S at age 3..not early enough to totally correct through casting, though we are still doing casting 1 year later (thank you CAST!). My daughter has mitral valve prolapse, and my son was born with more serious heart defects. I try to spread word about the connection between these two medical issues! Good luck with everything!
-Ami
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