Our Family’s Journey with Spina Bifida

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Our journey began in the fall of 2013 when I was 32 weeks pregnant with twin boys. Being pregnant with twins means you have a lot of extra appointments and ultrasounds. Up until this appointment, I had received glowing reports from my doctor. I was doing so well carrying twins. The boys, whom we referred to as Baby A and Baby B, were healthy and growing. But this appointment was different.

Following the ultrasound, we were escorted to a room that was in a different area and much smaller than our typical exam room. Our doctor came in and told us she had some bad news. They were concerned with the size of Baby A’s brain ventricles. They had increased significantly, meaning something was wrong. We were in shock. Though questions immediately flooded the room, our doctor apologetically told us she couldn’t give us any further information. She advised us that we would need to meet with a specialist.

How? How do you go from what seemed like an almost perfect pregnancy to this? The specialist diagnosed Baby A with aqueductal stenosis after discovering the increased ventricle size had been the result of built up cerebral spinal fluid caused by a blocked aqueduct in the brain.

Knowing Baby A would need lots of prayer, we felt like our little guys needed names. We named Baby A “Andrew Wesley” and his brother “Alex Kyle.” Although we were extremely upset, we researched the diagnosis and met with the specialist each week. We began preparing ourselves for what this would mean for our family.

As my due date approached, we felt like we were ready to handle the trial set before us. But, the day the twins were born, Andrew’s diagnosis changed drastically. The excess fluid on his brain had actually been the result of myelomeningocele, the most severe form of spina bifida. An area of his spine failed to close completely, causing nerve damage. They missed this on the ultrasounds. A couple of hours after birth, he was rushed to Children’s of Alabama to close the opening on his back. This began the most difficult time in our lives.

Spina bifida - Andrew was rushed to Children's of Alabama and underwent surgery.When I think about the birth of a child, the images that come to mind are those of overjoyed (though exhausted) parents and visitors coming in to fawn over the cuddly newborn. Our reality was quite different. My husband Wes went with Andrew to Children’s while I was still at another hospital recovering from a cesarean section. At the same time, I was working tirelessly to get Alex out of the NICU. He had been admitted as a precaution from Andrew’s diagnosis, since his head was a little misshapen due to his position in the womb. We were separated and felt helpless.

Andrew had his first surgery the day after birth, and I, his mommy, couldn’t be there for him. My world was shattered. On Sunday, three days after the twins’ birth, Alex and I were discharged from the hospital. I was finally able to go to Children’s to visit Andrew. Andrew was scheduled to have his second surgery the following day, shunt surgery. Since I couldn’t drive, Wes came home to pick me up to take me to the hospital. But that day, a huge snowstorm hit the city of Birmingham. If we both went to the hospital, we’d risk getting snowed in, leaving Alex at home without Mommy or Daddy. As painful as it was, we agreed I would stay home. The next three weeks consisted of daily trips to the hospital for Wes, splitting his time between the hospital and home. He knew each doctor’s schedule and made sure he was there to talk to them every day. He would carefully relay the information to me, as delicately as he could. Thankfully, because we have such a wonderful family, Andrew was never left alone. If Wes or I were not at the hospital, one of our parents was.

Spina bifida - visiting newborn Andrew in the NICUI still have a vivid memory of us sitting on the couch sobbing uncontrollably. We were overwhelmed. We knew we couldn’t handle this on our own. I remember asking Wes, “Why Andrew? Why is this happening to our family?” The prognosis was bleak. We learned very quickly that doctors often give you the absolute worst-case scenario in order to reduce unrealistic expectations. And their delivery can be compared to the ripping off of a band-aid. It was quick, and it was painful.

We were told Andrew would likely be paralyzed from the opening on his spine down and have cognitive impairments. We were given huge binders detailing all the things he would more than likely NEVER be able to do. Early on, we knew this simply would not do. We knew our God was bigger. We knew our attitude would determine the course of our future — of Andrew’s future. We made a decision: we wouldn’t settle for this outlook. We would trust in God and pray. While in the hospital, a dear friend of mine reminded me of the promise given in Joshua 1:9 — “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Ever since, this has been our family’s verse. No matter the difficulty, we had to be strong and courageous for Andrew. We had to trust God was with us.

Spina bifida - The Butler family motto is "Be strong and courageous."Over the past six and a half years, we have learned so much through our journey with spina bifida. We’ve seen God in ways we never would have seen Him otherwise. We have been given a better understanding of His love, grace, and wisdom. We have seen the power of prayer and have witnessed miracles. A little boy who could have sustained severe brain damage is absolutely brilliant, constantly blowing people away with his vocabulary and wit. When his doctors and physical therapist told us he wasn’t ready to walk, we told them we wanted to try. Hesitantly, his physical therapist pulled out a gait trainer and guess what? He took steps. He now walks with a walker and is working on mastering crutches. We have watched him defy the odds time after time.

We have also had to witness an innocent child enter the operating room ten times, four of those for very serious brain surgeries. We faced a trial we had no control over. We surrendered everything. We prayed. We cried. I cried a lot. Together — not so much with words, but deep in our hearts — we made a choice. We chose strength and courage. We would not let this hold us back. It wasn’t easy. It never will be. We’re not perfect. But we know God is in control and He is good. We know Andrew’s future and well-being are greatly dependent upon our attitudes and the choices we make.

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I would like to sit here today and tell you we have it all together. That our smiles are always genuine and we have no fear of future obstacles. But it’s just not true. Honestly, this life — this path — it’s hard. It hurts. Hardly a day goes by where my mind is free of negative thoughts. It is a daily fight. I have to fight bitterness and hurt.

I’ve had my precious little boy — just three years old at the time — look at me and tell me he wished he was his brother. That he wanted to jump like Alex. He wanted to walk without a walker. He didn’t understand why he couldn’t “walk on his feet” like the rest of the family. My heart shattered into a million pieces. I was doing my best to keep it together, to be strong. But the pain was too hard to contain. How do you explain such a complicated reality to your three year old? How do you tell him this world is full of sin and sometimes life is just simply unfair? I was able to muster up enough words to tell him all I wanted was for him to be Andrew. That he is special and uniquely created by God.

I realized that day something I really already knew deep down. This wasn’t going to get easier. This journey we didn’t see coming — that we never would’ve chosen — it wasn’t going away. Pain is always looming, ready to strike. The choice between being better or bitter is day by day, second by second. The enemy seeks to devour us, daily.

Spina bifida awareness - Andrew walks with the aid of a walker.In his short time here on earth, Andrew has endured more than some will in a lifetime. As parents, the only thing we can do — the only thing that makes sense — is to point him to God. When the disciples asked Jesus, “Rabbi who sinned, this man or his parents, that he was born blind?” Jesus replied, “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Our prayer is that God continues to use Andrew to display His works. That he can somehow use our imperfect family to show His perfect grace and His glory to others. As you go throughout your journey, whatever it may be, I want to encourage you to be strong and courageous!


Megan is a second grade teacher and mother to three precious boys — Andrew and Alex, who are 6, and their new little brother Ace, who is two months old. She was born in Birmingham, Alabama and raised in Morris. She attended UAB where she earned her Bachelor’s and Master’s degrees. She and her husband Wes have been married since 2009. They are in the process of building their completely accessible forever home. Megan enjoys spending time with her family and friends, attending church, and going for a peaceful run.

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