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.
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