By Sarah Inge
Mommy to John
Spina Bifida (Myelomeningocele), Hydrocephalus & Chiari 2 Malformation
Born 2017
When I found out I was pregnant, I wanted what everyone wants: a healthy baby that I’m going to run after, potty train, all those milestones. It never crossed my mind that something could be wrong. When I found out I was having a little boy I thought I’m going to have a little football player and dreamed about going to his games and cheering him on.
At my 20-week ultrasound they were doing the measurements of my baby and they kept measuring his head and looking at his back. I’m a RN and I was just so excited to be pregnant; I didn’t give it much thought. The following day my OBGYN called me to let me know she was reviewing the ultrasound and my baby has a lemon shaped head and a large lesion on his back: he had Spina Bifida. We had to see a high risk doctor too. We had a lot of tests, imaging, blood work and amniocentesis done to confirm the diagnosis. I was told by the doctors that my child was going to have a very grim life because of the lesion location. He may not be able to breath on his own, be able to eat, no leg movement, maybe no arm movement, no bowel or bladder control, and a long list of other things my child would never be able to do. I was asked 4 times if I wanted to abort my baby because I needed to think about who would take care of him when my husband and I die. We made it clear that our baby was alive, I was excited to be a mother, and I would face whatever God gives me.
I had to come to terms that my baby wasn’t going to be like other little boys. That he may not walk so no football. That he wasn’t going to be able to walk or run on his own and that we were going to have a different way for him to go to the bathroom so we wouldn’t be potty training either.
I had a planned c-section at a hospital for such high risk situations so they could immediately give him the specialized care he needed. There were two teams in the delivery room, one for me and one for my baby. I was a nervous wreck leading up to John’s birth. I also knew we were going to be in different hospitals after delivery, and I agreed not to leave my hospital for 3 days so I could be discharged early to be with my baby. During delivery they had a hard time with getting my baby out because he had hydrocephalus (his head was swollen). They were trying to cut me as much as they could and I was feeling it and they had to give me a lot of pain medication. They called another doctor in to help assist with my baby being born. Once he was born, I was able to hold him for 5 minutes and then they had to take him to a different hospital. In the process of having my baby I lost a lot of blood, so I felt I wasn’t in my right mind after I had him as I wasn’t thinking/talking clear. So I had my family follow my son to make sure he was okay. So I was there alone and I was a mess. I had to be given medication to help keep me calm, as I knew my baby was on his way to have surgeries and I wasn’t going to be there with him.
John was in the NICU for 31 days. I was able to see him for the first time three days after he was born and I stayed with him day and night. It was 25 days before I was able to hold him for the first time.
John had his back closure surgery the day he was born. They moved a muscle from a different part of his back to put over his opening because he didn’t have muscle at the opening. Then they took skin from a different part of his back so he was his own skin donor. Day three of life the fluid in John’s brain didn’t go down after his back was closed. We were told that when children are born with Spina Bifida their spine is like a kinked garden hose, so cerebrospinal fluid (CSF) builds up within the fluid-containing cavities or ventricles of the brain. That will cause a lot of pressure and make the head swell. So his second surgery was at three days old, when they implanted a VP shunt to allow the CSF to drain off his brain.
During our first year we were in and out of the hospital to see different specialists: Urologist, Orthopedic, Neurologist, Physical Therapy and Occupational therapy. At two months old, John needed surgery again because he had six different hernias, which I was told this was normal with children with Spina Bifida.
At six months, John was fitted for a helmet that he wore for a year. With John being in the NICU for the 31 days and having his back closed he had to stay on his stomach, and once he had his VP Shunt, John had to keep his head to one side for two weeks. This all changed the shape of his head. The helmet helped reshape is head to make it look normal.
When John started teething, he was getting ear infections all the time. so at 14 months old, he had tubes placed in his ears. When talking to his ENT they said this isn’t uncommon for children with Spina Bifida to need tubes placed and just part of our journey.
In March of 2023 (at 5 years old), John told me that his head hurt and it felt like his brain was going to explode. I took John to the Hospital ER and they tested his VP Shunt to confirm that it had a malfunction. He had emergency VP shunt repair surgery. I was told that we will have multiple VP shunt repairs we will need to have done during different growth spurts.
This past July 2024, John was in the hospital for eight days to have procedures done to help with urination (Monti procedure) and bowel movements (MACE procedure). This was a 9.5 hour surgery and this was very hard on not only John but our family. It was hard to see our child in pain, and even though we talked about his surgery before it happened, it was hard for John to fully understand why he needed to have this surgery.
John is unable to stand independently. He is paraplegic from the waist down. He does have some muscle tone in his right leg and his leg will involuntarily move on its own, but he can’t control it. He has custom a made THKAFO that he can use with a walker. This does take a lot of out John, so he doesn’t use them all the time. John is a full time wheelchair user.
He’s has started asking why he has to wear diapers like babies, why is his legs are broken, why can’t he walk, and why does he have a shunt. My son will also look at children running around when he can’t with a longing to want to run with them. These questions and longings don’t only affect him, it also hurts me too, but I can’t let it show to him so he doesn’t fell bad about what he can’t do. So I explain to him why he has to wear diapers, that his legs aren’t broken, his wheelchair is like his legs, that his shunt keeps his head from swelling, and hurting. I tell him that God made him perfect. As for his longing to run with other children, my husband, family and I all take turns caring him so he too can run around and play.
Despite all of this, John is a happy boy that is loved beyond words, eats and breath on his own, has a strong upper body, is in school, has friends, and has a very bright future ahead of him. He’s 7 years old now and in first grade, though he learns a bit slower. I was told that with children with Spina Bifida it’s not uncommon. I was told to think about Swiss cheese and that the information that they are learning keeps slipping through the holes until you find that wall where the a hole stops and the information sinks in.
John is a very lovable little boy and loves to talk with everyone who he meets. John loves baby’s and wants to hold them whenever he sees them. He has and older brother and younger sister. John and his siblings are very tight and love each other. They are like any other siblings and like to play with each, aggregate, annoy, laugh, and talk with each other. John’s older brother Robbie just taught John and their younger sister Norah how to play video games so they can play video games with him. We treat John like any other child and hold him in the same level and expect the same things I would out of my other two children. John’s siblings are two of his biggest fans. When John is struggling they are both there to cheer him on.
We thank God for sending us John! He is loved more than He knows and for us he’s perfect.
I hope that people will be accepting of my son and know that just because his legs don’t work doesn’t mean he’s any different. My son may not play football but that doesn’t mean he can’t do other sports. I expect my son to one day get married and have babies of his own.
I’ve loved working with On Angels’ Wings! They’ve been providing pictures of John and our family since he was born, whether it’s getting pictures at our home or park, to help us capture memories of our son as he grows. OAW has helped us capture so many memories of our son that we wouldn’t have been able to if it wasn’t for them.
