Three years ago I was 22 weeks pregnant and sitting in an ultrasound room waiting to hear if our newest blessing would be a boy or a girl. The nurse told us we were expecting a little princess, and we couldn’t be more excited! We already had an amazing little boy, Conner, and now we would have a little girl too! She also told us she saw some abnormalities, but since the doctor wasn’t there, she sent us home. We weren’t too worried about what the nurse found and just brushed it off. The next morning I got a call from the ultrasound doctor, and that’s when our lives got thrown upside down. He explained that Madi had the lemon sign, hydrocephalus, and that they couldn’t find some areas of her brain. The doctor refused to tell me what the results meant but referred us to a specialist. The specialist’s office said they couldn’t get us in for a month, and I was devastated. I couldn’t imagine going an entire month without knowing if my little girl would be ok, it was terrible! Thankfully our midwife was able to get us in sooner by finding an appointment at one of the specialist’s other offices, but I couldn’t wait that long without knowing what was going on. I was so afraid that Madi wouldn’t be able to make it full term and that I would never hold her in my arms. I felt so scared and alone. I cried, and cried, and then cried some more. It was awful. I prayed and told God that I could handle anything He threw our way, but that I just wanted to be able to hold her in my arms. I started searching online and came to the conclusion that she had spina bifida. I had never head of spina bifida before and had no idea what it meant, but felt better knowing what was going on.
When we got to the specialist’s office and had our level two ultrasound, the doctor confirmed what was seen in the level one ultrasound. He asked me if I knew what spina bifida was. I told him that I had looked online and had already determined that Madi had spina bifida. He asked us if we wanted to know our options and we told him that we loved our little girl just the way she was and that for us the only option was to give her life. He never pushed us, and for that, I was thankful! He told us that she had a type of spina bifida called myelomeningocele. He said that she actually did have all the areas of her brain, but that some were underdeveloped. He told us that many times other areas compensate for the lesser areas, and that she would most likely have average or above average intelligence. He explained that Madi had a pretty high lesion level and that she would most likely need a wheelchair. She also had a clubbed foot. Most importantly, though, he said that Madi had a great outcome and that there was no reason to think she wouldn’t live a long and happy life. I was SO relieved!!
After seeing the specialist we were referred to a neurosurgeon, a neonatologist, and were given a tour of the NICU at the local children’s hospital. We asked a lot of questions and did our best to prepare so that we could give Madi the best start at life. We talked to the neurosurgeon about the birth we wanted (we were told we had to have a c-section), about what to expect after she was born, and asked about a million other questions. He was very reassuring and was great about answering all of our questions.
At 36 weeks, they decided to induce us. Madi’s fluid levels were getting pretty
substantial and they were afraid that if they didn’t take her soon we would be risking long-term damage. We went in to have her, but she had other plans. After 36 hours in the hospital, 3 rounds of cervidil, a failed attempt at a Foley bulb, and very little sleep,she wasn’t budging! They said that we could have another week or a c-section, so we opted for another week (just as a note… traditionally they tell moms they need a c-section because it’s safer. Our neurogurgeon showed us all of the research and said that there was no proof that a c-section caused less damage or that it was better for the baby, even though Madi had the ‘open’ form of spina bifida. He said if her sack ruptured, it was no big deal, because he would be rupturing it anyway. We opted for a natural, vagnial birth so that I could be released quickly and be there with her during her surgery) When we went back at 37 weeks I had progressed over the span of the week so they started me on pitocin. Six hours (and about 4 pushes) later, she was here! She was so beautiful with a full head of dark hair and we were instantly in love. I got to have her on my chest for a while before they had to take her away, and I was in Heaven!! I spent that night with her in the NICU and the next morning she and David took an ambulance ride over to the children’s hospital. I got discharged shortly after and met up with them. Madi had her first surgery where they closed her back and inserted a VP shunt. Two hours after surgery I was able to hold her (with the help of our great nurses) and nurse her. She did so great! I requested a private room, which we got, and I was able to stay with her day and night. She recovered wonderfully and we were out in 5 days, which the hospital said was a record. I was so excited to be going home!
Life with Madi is a little different than I envisioned. I didn’t see therapy appointments, extra doctors appointments, surgeries, and wheelchairs in our future when I was dreaming about life with my new little girl. The truth is, though, that life is so much more amazing than I ever imagined too. Every time Madi accomplishes something that the doctors said she wouldn’t, my heart fills with pride. When I look at Madi, I don’t see the leg braces or the wheelchair. I don’t see the shunt or notice the lack of movement in her legs. When I look at Madi I see this amazing little blessing that is absolutely perfect. I see a little girl that has a magnetic personality; one that lights up a room as soon as she enters. I see a little girl who loves her life and who finds a way to accomplish any and everything she puts her mind to. When Madi laughs and smiles, everything is right in the world. She is so full of love and has added so much to our lives. I cannot imagine life without her.
In hindsight, I wish I would have saved myself all those tears and all that stress and, instead, would have just enjoyed my pregnancy. It’s funny to think that we used to be so afraid of what spina bifida would look like. Now we know just what it looks like; it looks like our beautiful daughter. We aren’t afraid of spina bifida any more. In fact, we are so not afraid of spina bifida that we are working on adopting a little girl, Ramya, who has spina bifida, from India. We know just how to help her and are looking forward to the day we can bring her home.
If you would like to read more about Madi, our adoption, or our family, please visit our blog at
www.aworthyjourney.com. Our hope is to share with new parents what we wished we had known when we first found out about Madi; that one day the spina bifida won’t matter and that all that will matter is the immeasurable blessing that they were given. A blessing that will fill their lives with joy, love, and pride beyond what they could ever image.
Thank you for sharing Madi's story Jamie! We still need more stories, click here to share yours!
This picture was taken right after Caleb was born, this was the very first time I saw him.
This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!
I just think this picture is so sweet.
Finally Home!
Logan was born on October 17th, 2008. He weighed 6 lbs, 5 ounces and was 18 inches long! Logan was born with Spina Bifida: Myelomeningocele, Congenital Hydrocephalus, Chiari II Malformation. He has Asthma, GERD/Reflux and Hydronephrosis of the left kidney. Logan's SB level is at an L5/S1 (Lumbar 5/Sacral 1)...
Ian was diagnosed with spina bifida when I was 17 weeks pregnant with him. He was born via c-section on his due date: 6/11/08. He had his sacral-level lesion closed the day after he was born, and a VP shunt placed at 7 days old. He left the NICU and went home at 10 days old. Neuro checks of his shunt showed that only one half of his brain was draining fluid, while the other half was retaining, so at 3 month he had a shunt revision to get the other side to drain as well. He has had no shunt problems or revisions since. Over the past two years, he's developed rather severe scoliosis, for which he wears a hard, plastic body brace until he can have surgery to correct it when he is older. Last August he got his first custom wheelchair and his first real taste of freedom; he loved it! This past September, Ian started Early Childhood four mornings a week through our school district, and also does PT, OT, and Speech therapy privately. At three and a half years old Ian only has a couple of words, but he knows many signs which he uses to communicate. He's a happy, smart, funny little boy who loves playing, technology, his cat, Baxter, his fish, Fred, and his baby sister, Lydia.