Scoliosis can affect babies, too

 

C J MUNIZ, 9 months old, is wearing the first of several body casts he will need in the hopes of correcting his infantile scoliosis. The cast is uncomfortable and keeps the baby from being able to sit up. C.J.’s case was severe and, because his spine was pressing on his internal organs, dangerous. His parents, Heather and Carl Muniz, thought scoliosis was only something that affected teenagers, and want other parents to know what to look out for in their young children


C.J. Muniz is only 9 months old, but he has already endured a lot and more lies ahead. The McComb boy has infantile scoliosis, a curvature of the spine that has pressed on his internal organs.


The baby, the son of Heather and Carl Muniz of McComb, is now in a full body cast, the first of at least three he will have to wear before undergoing further treatment. It means he cannot sit up and it’s hard for him to sleep.


Heather Muniz said the curvature of her son’s spine measured at 23 degrees at his first X-ray, but progressed to 41.9 degrees at a later doctor’s appointment and then 45 degrees.


Because the curvature is so severe, C.J.’s spine is pushing on internal organs, including his lungs, which caused further medical issues, his mother said.


She had associated scoliosis with teenagers, and had no idea it also happened in infants until her son was diagnosed. She wanted to share her family’s story to raise awareness.


“This is not only happening in teenagers,” she said.


But because it is fairly rare in infants, even a lot of doctors don’t know about it and don’t think to look for it, she said. C.J. had seen a doctor and a chiropractor before his diagnosis, both of whom missed it. He had been having breathing problems, but the connection to his spine wasn’t spotted.


When C.J. was 6 and a half months old and started sitting up, his family noticed something was wrong.
“He would lean to one side,” Heather said.


Also, his head was at a tilt.


At that point the doctor recommended an X-ray for scoliosis and when the diagnosis was confirmed, they referred the family to a specialist at ProMedica Toledo Children’s Hospital.


The diagnosis came Aug. 31, when C.J. was a little over 7 months old. The first doctor’s appointment was “very emotional,” Heather said. Doctors were worried about how pronounced the degree of curvature was. X-rays showed that the curvature was pushing on the baby’s lungs and he was referred to a lung specialist in Toledo. Other internal organs are also affected, including his heart.


C.J. must go through treatments with a breathing machine daily.


He was put into his first full-body cast on Oct. 1. He will wear it for six weeks, then will be out of the cast for a week to allow his skin to heal, then put into another body cast. The process will be repeated at least two more times, after which he will be fitted for a brace.


The cast reduces his spine to a curvature of only 11 degrees, which takes the pressure off of his lungs and allows him to breathe better. However, because the spine is flexible there is a concern that when the cast is taken off the curvature could come back, so the prognosis is uncertain. Heather said it’s possible that he might need “growth rods” put into his back around age 3 or 4.


Each time they put on a cast, C.J. must undergo anesthesia. The process of putting on the first one took a little over an hour.


The family learned they would have to make more trips to Toledo than they had thought, because C.J. must also go through physical therapy on his neck. Because his head had tilted to the right for some time, he will need physical therapy to stretch the neck muscles on the other side.


But the doctors told the family they are lucky C.J.’s scoliosis was caught when it was. Otherwise, the fact that his spine is pushing on his internal organs would have been life-threatening.


If it weren’t caught, “by the age of 1 and a half, he would not be here,” Heather said.

The cause of the scoliosis is unknown.


Heather said the prognosis isn’t certain. The doctor’s plan is to put C.J. into castings and braces “and hope that they work.” But if they don’t, he may need surgery, she said.


Heather said her baby is often in pain and discomfort, which they use ibuprofen to relieve.
“Nighttime’s the worst,” she said.

 

She said it’s also difficult if the family goes out, for example to a restaurant. C.J.’s cast prevents him from being able to sit up.
“I know he wishes he could sit and he can’t,” Heather said.

Lifting the baby up is trickier because his parents can’t just pick him up under the arms, but must work around the cast.


“This has all been so emotional,” Heather said.

Big sister Emma, who is 8, found it especially emotional at first. Heather said Emma takes good care of her little brother. Since C.J. can’t sit up, Emma will get down on the floor to be with him.
“They lay on the floor together and play with toys,” Heather said.
 

Heather stays at home with C.J. and Carl works at Findlay Products Corp. Carl plays with his son when he gets home from work “and consoles him,” and during the day other family also stop by. Heather’s mother and sister live next door, and Heather’s grandmother has also come to help with C.J.
“He is our pride and joy,” she said.


Heather said she and her husband, whom she called “truly amazing,” have become closer through the experience. A good friend has also been by her side.

Heather said the support of family and friends has helped. The family is also strengthened by their faith and by prayer. They attend St. Michael the Archangel Catholic Church.

Heather and C.J. have been sleeping in a recliner, as C.J. will not sleep in his crib because it is too uncomfortable. Even getting him dressed and diapered is a challenge, and the cast is heavy, Heather said.
 

C.J.’s parents can’t give him a bath. He must wear two diapers overlapping each other, because of the placement of the cast.

But C.J.’s lung issues have improved somewhat. He occasionally has episodes of problems breathing but these are not as frequent.

The family has health insurance. They are still uncertain how much medical expenses are going to add up to beyond insurance, but the brace he must get following his cast will be expensive. Also, they expect to spend a significant amount of money on gas as they will have to drive back and forth to Toledo several times a week. A GoFundMe account to raise money for these expenses has been created and more information is at https://www.gofundme.com/3b63hwnk.

Heather said the family is considering creating a walk to raise awareness during June, which is scoliosis awareness month, with the hope of maybe raising money toward research to determine why it happens at such a young age.

“I just really hope that more doctors take a look into things like this,” Heather said.



Source : The Courier , 20th Oct 2015