The moment we found out we were pregnant with our first child, we were beyond ecstatic! I’ve always dreamed of having a little boy first. I envisioned him playing in the dirt and being fascinated by earthworms. Or throwing the baseball around (or in my case, the softball), as his father and I did countless times in our youth. Maybe he would follow in my footsteps and go on to get an athletic scholarship to a Division I University. Or perhaps, he would have his daddy’s intellect and attend an accredited college someday (Go Tritons!). Whatever the case, we would support him every step of the way and accept whatever it may be that sparks his interest. We couldn’t wait for this journey to begin and it was finally happening.
It’s a hard pill to swallow, hearing that your child is going to be born different. When we first received the news that our son, Maddux, would be born with spina bifida, I was speechless. I literally laid on the table in the specialist’s office as he went through every detail of my unborn son’s level 2 ultrasound, which showed exactly where the opening in his spine was located. The doctor proceeded to tell me my three options: “You can carry to term, which is very risky and he will require immediate surgery after birth; you can see if you qualify for fetal surgery; or you can terminate the pregnancy.”
There was a brief silence, then he asked, “How are you feeling?”
I couldn’t bring myself to respond. He asked again. And again, I was silent.
He apologized as if the pregnancy was already over. I remained as stone faced as I could until I could no longer fight back the tears. I had just felt my baby “kick” earlier that morning. I listened to his heartbeat religiously at home. It was the most calming sound I had ever heard. And now I have to contemplate aborting the child that I so desperately wanted. The child that took four years and two fertility treatments to conceive. How does he think I would feel?
Joe and I gathered our belongings and the limited information we were given about fetal surgery, and were on our way. I clammed up for the next five days, not taking anyone’s calls, not even leaving the house.
The following week, we decided to get a second opinion from a doctor that was referred to us by our fertility specialist. He confirmed what the previous doctor found – that our son had the most severe form of spina bifida, known as myelomeningocele. He recommended we go to UC San Francisco to see if we were candidates for fetal surgery, which would repair our baby’s spine in utero. However, as there is only a short window of time in which this surgery can be done, we needed to proceed as quickly as possible.
After the exam, and as if to make his point, he very candidly said to us, “If you had a child that was in a terrible car accident and he lost the use of his legs, would you discard him?” Then he asked, “If your child was diagnosed with cancer later on in life, would you stop loving him?”
“No you wouldn’t,” he continued, “and this is no different here. You do the best that you can and you hope that it is enough.” Those words would stick with me throughout the next few months, as we began to fight for the best possible outcome for our little guy.
The weeks following the diagnosis were incredibly emotional. We were trying to wrap our heads around all of this and started to research everything we could about spina bifida. We got in touch with the local spina bifida clinic who put us in touch with a family in the area, whose mother had fetal surgery during the MOMS trial and whose 14-year-old son also has the same lesion level as Maddux. The family agreed to meet us for lunch and let us ask any questions we had on the condition. Nicholas is an incredibly intelligent young man with a bright future. He can walk with assistance but uses a wheelchair most of the time. He plays sled hockey with the LA Kings organization and doesn’t let his disability define him or hold him back. From that meeting, we knew that our son could live a totally fulfilled life with our support, love and guidance. I will always be grateful to the Jenkins family for meeting with us that day.
I had prayed really hard that we would qualify for fetal surgery in hopes of a better outcome for our unborn son. I knew it was not a “cure” for spina bifida. I knew this. But still, deep down inside, a part of me hoped that this surgery would miraculously make all of the bad stuff go away.
Having gone through this experience, I could never judge anyone for making a decision that was best suited for their personal situation. You truly never know what a person is going through until you walk a mile in their shoes. I can tell you that I have never prayed harder in my life, than in the few weeks I spent awaiting the results of the amniocentesis and approval for fetal surgery. My husband and I had to remain open minded until we got the results. We had three options, each with their own complicated set of circumstances. I pleaded with God to give me the strength to make the best decision for my family and I could only hope that termination could be eliminated as an outcome.
We qualified and surgery was scheduled for July 8th, just one month after receiving the diagnosis. The day of the surgery, I felt a great calmness come over me. I wasn’t afraid of it, in and of itself. I said a little prayer, for myself and for the little boy growing inside of me, as we were wheeled off to the operating room. I can remember the kind anesthesiologist telling me that I was handling all of this very well and that everything was going to be just fine.
In some areas, the surgery proved beneficial for Maddux. For the most part, however, he falls right in line with other babies who have an L1/L2 lesion level. He has very little movement in his legs and feet. He has a neurogenic bladder but for some reason, he is able to empty his bladder on his own and hasn’t had to be put on a cathing schedule as of now. When he was born, his ventricles were not of an alarming size, but his neurosurgeon kept a close eye on it in the coming months.
When Maddux was two-months old, we were at spina bifida clinic and his orthopedic doctor asked if anyone ever mentioned to us that our son may have achondroplasia. “Achondro-what?”, I thought. He explained that Maddux’s arms and legs were much shorter than normal and that he had other features that fall in line with a baby with dwarfism. Maddux had been in the NICU for 10 weeks and no doctor ever mentioned anything to us about dwarfism. No way. I’m not going to accept that, not after all we had already been through, I thought.
“He was born 10-weeks prematurely, could that have anything to do with it?” I asked.
“Oh he was?”, the doctor responded. I was dumbfounded that he hadn’t read Maddux’s chart prior to coming into the room, but yet go on to make an assumption about my baby. Then he proceeded to tell us that he wanted further testing done. My heart sank.
Fast forward seven months to when we finally got in to meet with a Genetics doctor (apparently, getting in with a good genetics doctor is hard to come by, so I was grateful a business connection put us in touch.) She read over the bone-scan report that was done two months prior and then performed a physical exam on Maddux, carefully looking over every inch of his tiny body, making notes along the way.
She stepped out of the room for a few minutes. When she returned, she told us, “Based on his medical report and what I see today, I can confirm that your son has achondroplasia, a form of dwarfism.”
Although I knew that would more than likely be the outcome, it still wasn’t any easier to hear. The doctor reassured us, “You have a gorgeous baby boy and he is incredibly happy. Little people go on to live incredibly fulfilled lives. He is going to thrive. You’ll see.”
At that instant, I was taken back to the very moment when we were given his initial diagnosis of spina bifida and all of the questions that I shoved into the furthest corner of my mind:
What will his quality of life be?
What will his social interaction skills be like?
What will he miss out on?
Will he be able to provide for himself as an adult?
Will he have a family of his own some day?
Will he have any close friends?
The tears came rushing down my face. Here we go again. I started to think about how Maddux will be treated by strangers and peers as he grows up. The stares and the questions, the bullying and the sadness he may feel when/if this happens.
My greatest fear is that I won’t be as strong as he will need me to be for him. Or that I won’t have the right words to help him through the difficult times. I fear that ignorant people will prey on him and all he will have are his words to protect him. I was picked on as a kid, as most of us were, and though I am able-bodied, it still hurt. How will he handle adversity?
I fear judgment.
The most difficult part is telling people the news. Saying the words, “My son has dwarfism… on top of spina bifida” really stings. Not just for the fact that he will be small but that he will have to explain to people for the rest of his life why he is different. He didn’t ask for any of this.
I am incredibly grateful for the overwhelming support from our family and friends. When I start to feel really sorry for myself, I realize that this is not about me. This is the fear taking over and this is me worrying about all of the things I have no control of. I am learning that we really have very little control over anything (which is extremely difficult for a control freak like me). Instead, I’ve come to appreciate the beauty of what’s in front of me. My little boy has the sweetest smile I have ever seen and his infectious laughter has me crying tears of pure joy. His witty personality has me laughing hysterically and it is in these moments that I know he is going to live an amazing life. He is perfect in every sense of the term.
I will constantly remind my son of his value and how loved he is. I will remind him that his father and I wanted him so badly and that God doesn’t make mistakes. I will raise him to accept that everyone has their differences and that is what builds our character and makes the world go round. I will be his biggest advocate for the rest of his life and I can only hope that with all of that, he will never feel alone or that he is any less of a person.