Family hoping breakthrough Spina Bifida procedure will help 'miracle baby'

A couple was thrilled to find out they were having a baby, after dealing with 10-years of infertility, but that excitement was soon overshadowed by fear when they learned their baby had spina bifida. 

RELATED: Houston-area family raises awareness about 'Yellow-Out Day' and spina bifida

They traveled from Missouri here to Houston to undergo a one-of-a-kind procedure from a surgeon at UTHealth, to give their daughter a more promising future. 

"We did IVF and she was our only embryo, she is truly a miracle," exclaims Sarah Burch. 

Her daughter, Harper, has been through a lot in her young life, but her loving mother has done everything in her power to treat her daughter's spina bifida, including joining a high-tech study at UTHealth Houston. 

"They told us about the study, where they used a donated umbilical cord patch to repair the site, and that really sounded like a good plan to us," explains Sarah. "So that day, Dr. Papanna, who's heading up that study, called us. He spent 45 minutes on the phone with us that day and that's the phone call that changed Harper's life."

MORE: Family shares dramatic tale of late pregnancy during hurricane evacuation

The Burch's are 1 of 25 families who will try to make history in the treatment of spina bifida, using a donated newborn umbilical cord as a patch on their baby's spine. The procedure has the FDA's stamp of approval!  

Additionally, The Burch's and their doctors are hopeful this will lower Harper's chances of lifelong disabilities, from the most common disabling birth defect. Spina bifida means split spine, making it difficult to walk and go to the bathroom. Harper's surgeon, Dr. Ramesh Papanna, and the entire fetal surgery team with the McGovern Medical School at UT Health Houston are hopeful the patch could increase the quality of life. 

"The current standard of care uses local tissue to cover the spinal cord," explains Dr. Papanna. "What it does is create inflammation and scar tissue, which we call spinal cord tethering. As the child grows, that gets stretched and they can lose function, and it can cause pain, so the neurosurgeons go in and releases the tethered cord. However, this patch hopefully will reduce that kind of a complication down the road, and therefore the children don't need to undergo multiple surgeries as they get older."

He's a maternal-fetal medicine intervention specialist and again, the surgeon who performed the minimally invasive procedure when Sarah was almost 26-weeks pregnant at The Fetal Center at Children's Memorial Hermann Hospital.

RELATED: Jordin Sparks partners with Aflac to help children with sickle cell disease

While still in the womb, ultrasound and a tiny camera helped guide him to close Harper's spinal cord defect with the umbilical cord patch. 

"So this patch that we are trying to investigate reduces inflammation, reduces scar tissue, and helps the spinal cord to continue to grow normally, that's our goal," Dr. Papanna. "So we anticipate that the more number of children will be walking when they're three and six years old."

"It's a little too soon to say, but they are hopeful that she will be able to walk," says Sarah. "Right now Harper has function in her legs and toes, she's moving them, she has feelings, which is more than what they thought initially, so that's great for us and we have very high hopes for her, and we're really willing to tackle anything that comes along."


Harper is doing incredibly well and her parents are more hopeful than ever. 

"She makes my husband and I smile so much," Sarah concluded. "She laughs and smiles. The other day I was sticking my tongue out at her and she started mimicking me and doing the same thing, and she's just, she's already starting to be a little sassy at times which we love, but she's, she's just wonderful."

To find out more about Sarah's story, by clicking here.
Learn more on the study here.