This is the beginning of our beautiful spina bifida story. In 2020, after 4 years of marriage, we decided it was time to grow our family! This photo below was taken 2 days before our anatomy scan.. before we knew if we were bringing a little boy or a little girl into the world! We had no idea of the beautiful spina bifida story set before us.
Deciding to have a baby
Around February 14th, 2020, I shared with my husband, Chris, that I felt God telling me that we were missing out on his blessings by not trusting Him with the timing of our children. After all, the year a child is born determines so much.. who their peers are, who their teachers will be, political events, etc.. Up to that point, we had been married for 5 years and had been preventing pregnancy until what we thought would be the “perfect time” to grow our family. (Also, I think we were a little afraid of the changes it would bring to our quite “free and spontaneous” lifestyle). I had felt God say a few different times that He had so many blessings for us through our children and that we could trust him.
So, after a few conversations and prayer, we decided to allow God to decide when we should have a baby! It wasn’t long after, on May 5th, 2020, Mother’s Day in fact, we were thrilled and a bit scared to see those two solid lines appear! We knew life was about to change in very exciting ways!
18 weeks gestation anatomy scan
In the first few ultrasounds, everything was fine.. the heartbeat was good and there was nothing to worry about!
On July 29th, we went in for our anatomy ultrasound. On the way there, we were discussing how we wanted to find out if we were having a girl or a boy. We planned to have the ultrasound tech write the gender on a piece of paper for us to open together alone over lunch. During the ultrasound, Dr. Chen was a little quiet as he moved the ultrasound head over my belly. I noticed that he wasn’t affirming that everything was looking good. I made small talk by saying, “I’m sure this is a very fun job getting to reveal to people the gender of their baby.” His response was, “yes, but it’s not always good news.”
Spina Bifida Diagnosis
Minutes later, he informed us that our baby was growing appropriately, but he saw a few concerns. He began to point out the enlarged size of the ventricles in our baby’s brain (meaning fluid was building up inside of his brain) and also where our baby’s spine and neural tube had not formed correctly, which would leave the spinal cord and spinal nerves exposed and likely damaged. He informed us that his findings were consistent with a myelomeningocele, which is the more severe form of spina bifida.
The hardest new of our lives
We were devastated and scared. This news was far from anything we expected to hear that day.. how could anything be wrong with our baby? I reached for Chris’s hand, and he held mine as my eyes filled with tears and we continued listening as the doctor continued. He informed us that spina bifida has a very large scale of the severity of symptoms, from fully dependent and needing lifelong help with basic aspects of daily life, to becoming a Harvard track star. He let us know the options ahead of fetal surgery for closure of the spinal defect in the womb, surgery at birth, or termination of the pregnancy prior to 24 weeks gestation. He told us that some parents choose not to continue with the pregnancy, but he then chose to share a story about a group of medical students who were presented a patient case of a baby with a severe form of spina bifida, just like Jack’s. When asked who would decide to keep the baby or terminate, the class vote was split half and half. Moments later a girl walked across the stage with her braces and crutches.. she was that baby. I believe this was Dr. Chen’s way of saying, “it’s a beautiful story if you decide to keep your baby.”
Decisions to make
He then began to tell us the next steps in the plan… amniocentesis, followed by genetic counseling, and then a referral to UCSF for fetal surgery. He left the room to prepare for the amniocentesis. We were left alone in the room to process the news we had just received and all the unknowns for our baby. Tears overflowed from my eyes as I endured the pain from the amniocentesis procedure, both from physical pain and the heartache I felt. Heartache at the realization that there was nothing I could physically do to restore my baby’s spinal defect, heartache at the unknowns of what would lie ahead for him in this life, and heartache as we began mourning some of the hopes and dreams we had for our precious son.
Lots of Tears
I cried the whole way home from that anatomy scan and daily for the weeks and months to come. I had no idea what this life on Earth would look like for our sweet baby boy. We were believing for a miracle, pleading with God to do a miracle in my womb. And at each of the following appointments, it seemed that the opposite was happening, as the findings at each visit were worse than the previous.
The Hope of Fetal Surgery
We were hopeful for the fetal surgery, but we were turned away at UCSF due to the size of Jack’s ventricles. Then we found a doctor who was doing a less invasive fetal surgery, and on the phone he was very encouraging that his surgery would work. Once again, we had hope for the opportunity to do whatever we could to help our son. But at the end of the two ultrasounds, it was deemed that the surgery’s risks would outweigh the benefits, as his ventricles were too large and he had very little to no leg movement seen over the course of two, 30 minute ultrasounds.
We left LA, once again, completely devastated. We had hopes in this fetal surgery, which would close the opening in the spine in my womb and protect the spinal nerves from exposure to the amniotic fluid for the remainder of my pregnancy, but Dr. Chmait at LA Childrens did not agree to do it due to the severity of Jack’s case. I had in my mind a picture of a little boy learning to walk with crutches and now that seemed like an unreachable dream. My heart just ached for my son. We of course want the best for our children, as all parents do, and I could foresee that he was going to be starting out with a very difficult and lifelong fight ahead.
We will name him, Jack
We decided to name him Jack. I think God gave me this name long before I met Chris, and after searching other boy names, this is the only name that felt right! To me, Jack is a name that is strong, but playful, and I wanted his name to be easy for other kids to remember. Jack also means “God is gracious,” as it is a nickname for the name “John”. This meaning is important to us as a reminder of the truth written in Ephesians: “it is by grace that we have been saved.” By grace and grace alone that we are saved and this salvation is a free gift.. we cannot do anything to deserve it.
Hope in The Healer
As the moments of tears and heartache kept resurfacing, I realized that my hope was lying in great medical intervention and/or supernatural healing. I was hopeful that at each ultrasound there would be a miraculous change and we would have this great story of healing to be able to bring glory to God in those medical offices. However, as each appointment continued to reveal and unravel this unexpected reality for our baby, I knew that I had to change and put my hope in Jesus and Him alone, despite healing or great medical miracles/intervention. I needed to trust God no matter what would lie ahead.
On Our Knees
We prayed every night on our knees, still asking God to do a miracle, but also for Him to increase our trust and faith in Him and His plan. I began to find hope in the truths I understand about God.. that he is fully in control, and He wouldn’t put Jack on this earth if he didn’t have a very specific plan for him. I began to see Jack’s life as having this very specific role for God’s kingdom here on Earth and I was filled with anticipation and gratitude that I get to be his mom! We were able to find joy and excitement as we imagined life for our son, and we knew it was going to be nothing short of incredible!
Filled with hope, joy, and peace
This trust is what we carried with us for the remainder of my pregnancy, as we began the journey of becoming parents to our precious son, Jack. Trusting God was the only possible way to, quite literally, “make it” and to come out on the other side of this valley with a stronger marriage, a stronger faith, a stronger testimony, and overflowing hope and joy. We knew that Jack deserved for us to bring him into this world with that solid foundation. We memorized this verse written by the apostle Paul, and we prayed it often:
“I pray that God, the SOURCE of HOPE, will fill you completely with JOY and PEACE, BECAUSE you TRUST HIM. Then you will overflow with confident HOPE through the power of the Holy Spirit”- Romans 15:13
which explains why we were able to find hope and joy in the midst of severe heartache. I pray the same for you who is reading this.. whatever you are going through and whatever heartache you are experiencing, I pray that you will find the ability to trust God, the source of hope, so that he can fill you completely with joy and peace in the midst of your deepest hurts.
Additional Scriptures:
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.– James 1:2-4
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”– John 16:33