Kasey and Carter's Story: Fetal Surgery & Spina Bifida

By Kasey Hilton

“Actually Kasey, you would be the first.”

These aren't exactly the words I was preparing to hear when I asked my doctor who I could talk to about my upcoming major surgery. I wanted to physically, mentally, and emotionally brace myself for what the next 3 months would entail. It changed the course of my life as well as my unborn son’s. Let me take you back and share how I got to this point.

June 24th, 2014. I was 19 ½ weeks pregnant and went in for what I thought was going to be my only ultrasound because I was going the route of a midwife. However, what I thought I had planned for my life, had other plans.

My one, 30 minute ultrasound appointment at C.S. Mott Children’s Hospital turned into a 4 hour appointment. I learned I would have a son. I also learned that he has a birth defect. One that happened to him before I knew I was even pregnant. One I had never heard of in my life until that day. Spina Bifida; myelomeningocele, hydrocephalus, Arnold Chiari II Malformation.

Spina Bifida literally means “split spine” and there are eight different types of Spina Bifida. The diagnosis we received that day? Myelomeningocele. ‘This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities.’ (https://www.spinabifidaassociation.org/what-is-spina-bifida-2/ )

https://www.cdc.gov/ncbddd/spinabifida/facts.html

My husband Mike and I were given three options; termination, surgery when the baby was born, or an in-utero fetal surgery, where a team of doctors would perform surgery on the baby while pregnant, and then continue the pregnancy as long as I possibly could.

Now I want to say very clearly, there is no cure for Spina Bifida. This is a birth defect, and with birth defects there is no cure. However, this fetal surgery would place his nerves back into his body through his spine, and close up his back.

I also learned that not everyone gets to just have this surgery; both you and baby have to be a candidate. There is a very short window of time where this surgery can take place. I was 19 ½ weeks pregnant when we learned about the diagnosis and we only had a 5-week turnaround to find out and have this surgery performed.

Decisions had to be made quickly, and ultimately wanted to be able to do whatever we could to support our baby. Testing to see if our son and I were candidates started immediately. Step one was having to complete an amniocentesis. This was because if our son had any other diagnosis from this test, we would not qualify for the surgery. Step two was a fetal MRI so doctors could see where on his spine the legion was, and if the location made him a candidate. Step three was a physical. For this surgery it’s not just the baby that has certain criteria, but mom as well. I had to be in good physical health with no underlying issues or surgery was not an option. Lastly, we wait. We had to wait for all of the results to come in and then the decision was made.

We were candidates. In-utero fetal surgery for Spina Bifida was going to happen. July 29th, 2014. I would be 23 ½ weeks pregnant.

It would change the remainder of what I thought pregnant life would be. I would be hospitalized for a week after surgery for close observation. Once home, I would be on STRICT bed rest as long as necessary; Only be allowed to sit or lay in bed, no baths or standing in the shower, and weekly ultrasounds to check the healing of both myself and my son.

I walked into our final appointment with a list full of questions on what to expect. What to pack, what bedrest will look like, anything I could think of. I asked my doctor, “Is there anyone I can talk to who has been through this so I can prepare myself?” Then I saw it. I saw the look on my amazing doctor’s face as she replied “Well actually Kasey, you’d be the first.”

This would be the very first time this surgery was done within the state of Michigan. To date, C.S. Mott Children's Hospital is the only hospital in the state of Michigan to offer this surgery to future families. So, I took a deep breath, looked at Mike, and said “well okay then, let’s do this.”

July 29th, 2014 we checked in to prepare for surgery. We met with 18 different doctors and surgeons to talk to me about what they would be doing in part of the surgery. After meeting with the entire team one last time, being hooked up with IV’s, receiving an epidural, and saying ‘see you soon’ to my family, baby boy and I were wheeled into the O.R. for the first in-utero fetal surgery for Spina Bifida in Michigan.

Here is how fetal surgery for Spina Bifida works. I was cut open horizontally below my belly button but above where a c-section takes place. From there, the thickest part of the uterus was cut vertically. My son and I had our own anesthesiologist watching us throughout surgery.

Once being cut and the uterus is pulled into place it's time to work on the baby. One doctor actually placed her hands inside of me and held the baby so that his back was exposed and could be worked on. It was at that time of being exposed where the neuro-surgeon had to place the baby's nerves that were out of his body and in the amniotic fluid from his spine and place them back into the body, cover that area with a mesh to heal, pull the skin where the hole is to close up the exposed part of the body, and then stitch the skin up so that the nerves would stay in the body.

Surgery took about 6 1/2 hours and although I had a long road ahead, my water had not broken which was great news because this meant that I did not have to stay in the hospital for the remainder of the pregnancy.

The 24 hours post surgery were the most crucial for the baby and my healing process. It is during this time that losing the baby was the biggest risk and that my uterus could rupture and tear open after stitching me back up.

We were monitored very closely until it was finally time to go home. There were many rules, medications, and weekly follow-up appointments. Making sure we got to 30 weeks was crucial, and we celebrated when we hit the 30-week mark!!

We continued this routine for 11 weeks, and when I was 33 weeks and 6 days I was admitted, and it was time to have a baby.

On Friday October 10th, 2014 at exactly 34 weeks, my son, Carter, was born for the second time.

He spent a month in the NICU before being able to come home and as a family, we learned very quickly that his team would become a second family.

In his 9 years on this planet, Carter has undergone 9 surgeries including brain surgery, resetting bones, and another major spinal surgery. He has nine specialty doctors, annual clinics, testing, wheelchair fitting, and more leg braces than we can count.

In his 9 years on this planet, we have seen him do absolutely incredible things. Carter has defied all the odds given when we learned of his diagnosis, and this video shows us all how incredibly lucky we are to be his parents, watch him grow, and continue to do whatever we can to support him to be whatever he wants to be.

Dr. Deborah Berman, Dr. Marjorie Treadwell (Maternal Fetal

Medicine Von Voigtlander Women’s Hospital) with Carter.

Carter after brain surgery 2014.

When you learn of your baby’s diagnosis a flood of emotions can hit you, and continue to hit as you wrap your head around what life is going to be, and perhaps not what you thought.

Find people who have lived what you are living, who have experienced what you are experiencing. Find support groups of people who share their stories, and make connections with them because they truly understand what you’re going through and can be your greatest support system not just then, but as your child grows. Don’t be afraid to get a second opinion because that first person you see, may not have the most up to date information on what’s available. We were lucky enough to be in the right place with the right people at the right hospital, and I know of others who haven’t been as lucky. Trust that parent's intuition, find your people, and don’t be afraid to be the first. It may end up changing more lives than you realize.

Kasey Hilton resides in Michigan with her husband, Michael, and is the mom of two amazing boys, Carter and Colton. Kasey has been an educator for the last 14 years and recently became a family advocate for the Arc, a National Nonprofit Foundation that supports people with disabilities. She is a published author and speaker.