Hayden’s Story

A Mom, it is what I have always wanted to be.  Families have been my passion since childhood and the focus of my studies in undergraduate and graduate work.

Finally, It was my turn to have a family of my own! I was married and almost 2 years later was expecting our first child.  At 18 weeks we were so excited to find out the gender of our baby.  “It’s a boy!” we were told.  Then they took us to a room and a new doctor, one I hadn’t met yet, came in to share some news with us.  “There are complications with your baby,” she told us. What a roller coaster ride we went on that day.   A couple of weeks later we visited the Perinatal Specialist.  After an ultrasound we were taken to this room with a conference table, a white board, and box of tissues.  I knew it was not good news.  The doctor came in and began to write on the board,  Dandy Walker Variant.  What is that?  The doctor began to explain that it could mean a variety of things and was a disorder with a wide spectrum from mild to severe.  I went home and began to do my research.  One of the first articles I read was about Rain Man.  My face was hot with tears.  I wasn’t sure how I was going to be a mother to this baby.  I was very angry at first, how could God allow my baby to be born with struggles in the midst of his innocence.  I began to empathize with many mothers who receive this news everyday.

We continued to see the specialist every couple of weeks just to make sure that there was no extra fluid developing on his brain and to track his development.  Every time we stepped into that office we seemed to receive more difficult news.  I was done.  I was not going back until the week or two before the baby was born.  Nothing we had heard in the weeks previous was life threatening an we were going to love this baby no matter what.  The next week I was diagnosed with gestational diabetes and was told that it was best to continue to go to the specialist not just to monitor the babies health but mine.  I went, reluctantly.  The ultrasound tech sometimes turned on the 4D ultrasound for us because we were often the last visit of the day around 4pm.  On this day, I think she could tell I didn’t want to be there. She offered to turn on the 4D for us to help ease our anxiety.  When she did we saw something that put our minds at ease. He smiled right at the camera! The ultrasound tech said in 15 years she had never captured such a perfectly clear smile.  Everyone’s eyes were filled with tears.  It was as if it was his way of saying, “I don’t know what you all are worried about but I am fine in here.”  It was the sense of peace I needed and a true gift from God. ( I will scan in the picture of the ultrasound as soon as I find what box it is in since our move.)

Finally the day came for Hayden to arrive.  Although my labor progressed normally I was unable to deliver him on my own and was taken for a c-section.  Hayden was delivered surrounded by a whole team of NICU doctors and nurses on hand to assess any needs that he may have.  He appeared to be a perfectly normal, healthy baby.  Later that day the doctors performed an ultrasound on his head to confirm the prenatal diagnosis.  They came back in my room with these new words “Agenesis of the Corpus Callosum.”  Okay, I thought I was prepared for what we may face and now this whole new diagnosis.  The doctors explained that it was much like Dandy Walker and had a wide spectrum of severity. It meant he was missing the connective fibers between the two hemispheres of his brain that help the two sides to communicate with each other. We had been praying for this baby from the time of his conception and others had been praying for him after the diagnosis received during pregnancy.  I was still scared to death to be his mommy. All the child development stuff I had studied in grad school went out the window.  This was different.  He most likely would not develop like a “typical” baby .

I am proud to say we are so blessed.  We have had our struggles along the way and in the early years we had lots of test, speech therapy, ankle supports, and other interventions. Overall, the impact on Hayden’s life has been minimal.  I read stories of ACC kids who have many more struggles than we do.  Many of them do not walk, talk, have issues with hearing or sight, have severe developmental delay and academic struggles.  I pray often for families of children with ACC and offer thanksgiving to God for our blessings.  He is truly my miracle and each day as I watch him grow and progress I am so grateful that our struggles are minimal.  It is a sign of God’s constant protection and provision in my life.  Anytime I begin to worry about how God is going to provide I think about how Hayden walks, jumps (something he didn’t do until 3), and is beginning to ride his bike.  I rejoice as he reads and writes on the level of his peers.  Hayden has to work hard to accomplish some things that comes easy to his peers, like riding a bike, but he does it.  He didn’t walk until 16 months, but he did it.  He didn’t say much until the was 3 but won the “Best Storyteller” award in his 4 year old Pre-K class!  I was worried about being his mommy but I am so thankful that God chose me because I get to see little miracles occur each day as he grows and develops.  Things other parents take for granted I rejoice over often.  Once again I claim the verse in Ephesians 3:20.  “Now to Him who is able to do IMMEASUREABLY more than all we ask or imagine, according to His power that is at work within us, to Him be glory, in the church and in Christ Jesus throughout all generations forever and ever Amen.” NIV