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New Beginnings

The pregnancy test was positive. My heart caught in my throat, and my stomach dropped to my knees. All at once, I was incredibly thrilled and completely terrified.

I walked over to my husband, who was standing in the door way of the bathroom.

With a shaky voice, I said, “We’re having another baby.”

He looked at the test and replied, “Where’s the box? Where’s the instructions?” A reprise of the joke that he had made long ago when I showed him the very first positive pregnancy test I’d ever taken. A joke made when pregnancy tests brought hope, instead of fear. A joke made before Spinal Muscular Atrophy (SMA), the number one genetic killer of children under two, entered our lives.

Tears filled my eyes. “I’m so scared,” I whispered. I knew this was just the first of several tests to come and the only “positive” result that I wanted for our new baby.

“It will be okay,” he said. “We’ve got an angel looking out for us.”

 ***

Elizabeth Stone famously said, “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ” For us, though, this decision seems to be fraught with even more anxiety and stress. Because my husband and I are both known carriers of SMA, there is a one in four chance that a baby that we conceive naturally will have the deadly disease.

We lost our firstborn son Andy to SMA in 2009 when he was almost five months old. We conceived our second child just four months after Andy passed away. Our daughter Lucy, who is SMA-free, was born in 2010. She is a non-stop wonder who has brought so much light and laughter back into our lives.

When Lucy was just over a year old, my husband asked me if I would ever consider having a third child. We discussed and debated the pros and cons of adding to our family for months and months. These negotiations were very thoughtful and very serious.

There are options for families like ours who want more children, such as invitro fertilization with pre-genetic diagnosis, sperm donation, egg donation, and adoption. However, we were financially devastated by the medical costs associated with Andy’s illness and, while we are back on our feet now, we still simply couldn’t afford those options. For us, trying to conceive naturally was really the only choice left.

My initial feeling was that I could not face the risk of losing another one of my babies to SMA. We had already played the odds twice. Another funeral was too devastating for me to consider. You see, I am in the grief groups with other mothers who have lost again and again to this horrific disease. I listen to their stories and share their pain every day. I know how merciless that SMA can be and how it can rip a family apart. I know that odds can be deceiving. Perhaps it was selfish of me, but I was so very afraid of even the thought of facing my worst nightmare once more.

I’m still not over Andy’s death and don’t think I ever will be. I believe that Lucy was heaven-sent to help us heal, and she’s done just that – giving us a reason to live again. I didn’t want to allow the darkness to steal back in. Just considering the possibility of another baby, I was already feeling anxious. Was I strong enough to face the uncertainties of testing and the worries of waiting one more time?

But, my husband would not be dominated by fear. He felt like we owed Lucy – and Andy, for that matter – the chance to have another sibling. He felt like our family was incomplete and that our faith (in Andy, most of all) would be rewarded. He refused to let SMA dictate our lives. He looked at the odds in a different light – he saw a three out of four chance that our baby would be healthy. For him, the reward of a healthy baby was so much greater than the risk of SMA. He believed whole-heartedly that we were meant to have a third child.

He made a compelling argument. But, I still wasn’t convinced.

And then I had a dream, so vivid and real, that I was holding a pink and wiggling baby boy in my arms. In the dream, I was telling someone that he weighed 8 pounds, 13 ounces, and that he was born on May 8, 2013. He was perfect in every way. I woke up, immediately turning to my husband and telling him about it. We agreed it was a sign. Suddenly – against all better judgment – I found myself saying that we could give it another try.

Two months later, there we stood in the bathroom, stunned that we were expecting our third child. When I visited the doctor to officially confirm the pregnancy, we were shocked to learn that the baby was due to arrive in early May 2013. Was my dream coming true? Was it a sign from Andy?

***

We opted for the chorionic villus sampling (CVS) test to find out if the baby had SMA. I underwent the procedure, where a perinatologist takes cells from the placenta using a long needle through the abdomen. The cells are sent to a lab for genetic testing to determine if the baby is SMA-affected. The CVS test is more than 99 percent accurate in identifying genetic conditions like SMA, though it can’t measure the severity of the disease.

I was 11 weeks pregnant at the time of the test. During the pre-procedure ultrasound, my doctor found evidence of a major bleed in my placenta. She informed us that, because of the bleeding, the risk of losing the pregnancy entirely if the CVS was done would rise exponentially. After a lengthy discussion, we opted to move forward with the procedure. For us, ignorance of the possibility of SMA was a greater threat than the chance of a miscarriage.

The doctor took a conservative sample of my placenta and off to the lab it went. Because of the small sample size, the testing took much longer than anticipated. In fact, the cells had to be grown and cultured before any testing could occur. When the cells were ready, the lab’s protocol was to first perform a test to check the baby’s chromosomes. Then even more cells had to be cultured, which took yet another week, before the SMA test finally could be completed. The time passed so slowly, filled with my anxious prayers and nervous doubts.

28 excruciatingly long days after the CVS was performed, we received the results. We were having a healthy baby boy, who – like his big sister – is a carrier of SMA, but will be unaffected by it. To say that we celebrated this news is an understatement. A huge weight had lifted off of our shoulders.

As I’m writing this, I am almost 27 weeks pregnant. Lucy is now two and a half years old and is very excited to meet her little brother in three short months. The c-section, my third and final surgery, is scheduled for May 6, 2013. Andy, who would have been four this year, certainly has been busy in heaven.

We have just started to prepare the baby’s room for his arrival, which is a bittersweet task. Andy’s blue rocking chair and empty white crib are now in our new nursery, waiting for his little brother to fill them with new memories. Andy’s favorite toys and special blankets are on a high shelf, overlooking the room just as our angel looks over us from above. Some of Andy’s clothes will soon be in the closet.

I can’t help but hope that my newest baby boy – the boy I get to keep – will look like his big brother. That, through him, I can see Andy once more. That, when I touch his sweet face, his brother in heaven will also feel my caress. That, as he passes milestones, Andy will share our joy.

And, while still a bit scared, I’m starting to look forward to the future again. Andy, my littlest teacher, has reminded me of the power of dreams and of the transcendence of love. I’m trying to appreciate each moment of this – my last pregnancy – and to let go of the worries ever present in the back of my mind. I have to push away the thoughts that something could go very wrong, as it has before, and instead embrace what is. I have to remind myself that it’s okay to be excited and happy – that’s what Andy would have wanted for all of us. I’m trying to find my own peace, and I’m now feeling more hopeful than I have in a long time.

On May 6, our family of five, spanning heaven and earth, will be complete, and together, we’ll face this new beginning.

–Audra Perry Butler

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8 Responses to New Beginnings

  1. Catherine Alexander says:

    Congratulations! I’m so pleased for you all. I know you don’t know me, but I have a neuromuscular disease similar to SMA and follow some SMA blogs. Thank you for sharing your beautiful writing.

    Best wishes,
    Catherine

  2. Michelle Senne says:

    Congratulations! How exciting!! I am so happy for you and your family. I lost my daughter to a rare form of SMA last year and I just found out a week ago that I am expecting. I’ve been incredibly nervous and scared……plus anxious to get the testing done and find out the results. I, too, had a dream a couple of months before I conceived that I gave birth to a healthy baby boy. I’m praying that my dreams are telling me the truth..

  3. Darlene Doust says:

    Congratulations so happy for you all and bless your Angel Andy in Heaven . i can relate to losing a baby but under different illness . what a beautiful heartfelt story

  4. Kristen says:

    I am still crying as I write this Audra. I am so thrilled for you! I understood all of the feelings you described as choosing to have Aria was such a difficult decision. I have always felt that Georgia had a hand in sending her to us. I wish you nothing but joy and peace as you move through your ‘last’ pregnancy. Kristen xoxoxo

  5. Rosemary Perry says:

    You and Alan have my deepest respect and admiration. Your family will always be blessed by Angel Andy who will enjoy watching his baby sister and brother grow up together. A kiss or a hug to either one will always be passed right on to their big brother.
    Love,
    Mom/GiGi

  6. jess says:

    this was so beautiful and inspiring to read and i am so glad google brought me to this blog. my husband and i are also both sma carriers and have one healthy daughter who is a carrier. in my first pregnancy, the baby stopped developing at 8 weeks and i suspect sma may have been the cause. we did ‘roll the dice’ again and are anxiously awaiting the results of the cvs i had last week. i pray our outcome is the same as yours! wishing you all the best.

  7. jess says:

    i just had to share that right after discovering your blog post and writing the comment above, our genetic counselor called with the very same outcome! a healthy baby boy who is just a carrier like his big sister. i just am overcome by the coincidence. very best wishes to you and your family!

  8. admin says:

    Congratulations! I am so very happy to hear your news!!! Best wishes to you too!! – Audra

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