Day 8: Hearing the Diagnosis

Welcome to 31 Days of Spina Bifida Awareness: Day Eight!

You can see the opening in Mason’s spine to the left.
The vertebrae look like a zipper that just didn’t get closed all the way.

There is nothing that can prepare you to hear that something is wrong with the child growing in your womb.  Sometimes there may be clues but they only become clear in hindsight.  On August 30, 2011 at a routine 19 week ultrasound we learned that our seventh child would be our fifth son. Then the technician got quiet.  I could see her returning again and again to all the parts of the body.  She had me sit outside the ultrasound room to wait for a doctor.  That is when we learned our son had Spina Bifida and club feet. It was a shock. 

That evening I received a priesthood blessing from my husband. While there have been many times in my life when I have felt comforted by what I hear in a blessing this was different.  I was calm, truly I felt as if God was putting me in a little bubble so I wouldn’t panic, but the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk. 

We were referred to meet with a perinatologist two days later to confirm the diagnosis.  I knew before I went to that appointment that I needed a name for my son.  I wanted another way to bond with him and I wanted my doctors to begin seeing him right away as a child, not a nameless ‘fetus’.  We chose the name Mason and began using it immediately.

To say the appointment was an information overload is to put things mildly. We first met with a genetic counselor who took our family histories. We happen to have nothing that would predispose us to this or any other genetic condition, which is great. She also talked with us about the probability of the doctor wanting to do an amniocentesis. That is where they stick a needle into the uterus and draw out some of the fluid surrounding the baby to run genetic testing on. We let her know that was not our first choice as it would have no impact on our decision to continue the pregnancy but we were open to what the doctor felt was necessary to get the best picture of what Mason was facing.

Next we were taken to our ultrasound. The lady performing the ultrasound was a gem – she asked what we had been told and walked us through each part of our son’s ultrasound. She explained what we were seeing and smiled with us over Mason’s energetic antics in the womb. I will be forever grateful for this kind woman who took the time to explain the things she was looking at.  After about 40 minutes of ultrasound she left to bring in the doctor. 

Doctor Fox and two students came in. Again, they did not assume anything, they asked what we knew. After looking at the pictures from the ultrasound Dr. Fox did his own ultrasound to see it all “live”. He explained what he was seeing and then after he was done sat down to talk with us. He asked some questions and answered ours. He was aware of the fact that this is our tenth pregnancy and we have six living children at home, so he only one made reference to to option to “terminate the pregnancy”.  We reassured him that abortion, which is murder, was not an option.  I was grateful that he did not choose to pursue that line of discussion after our affirmation. 

I know now that our experience was unusual.  Many medical professionals paint a grim picture of the baby’s potential life and push for termination.  Parents are told a baby with Spina bifida will be brain damaged, never, walk, never talk, and be in pain at all times.  You only have to look at my son to see the truth.  Even with his ‘severe’ disability level the only thing from their horror list that may be true is he will not walk.  Many many children with SB are able to walk independently or with some bracing. 

This week I’ll share what it’s really like after you hear the diagnosis of Spina Bifida.  How did I get through the wait?  What changed in my medical care?  What plans did we need to put in place for birth?