Sarah Catherine - full Trisomy 18

We see life through a completely new lens, and we know she isn’t an accident, a fluke, or a clump of cells – but a valuable part of God’s beautiful plan, and a daily reminder of what’s truly important.

Sarah Catherine - full Trisomy 18In the Fall of 2018, we learned we were being blessed with another baby. I agreed without hesitation to take an NIPT blood test for the sole purpose of learning our baby’s gender. When my doctor called a few short days later with the news that I was very likely carrying a baby with Trisomy 18, I had no idea what the potential diagnosis meant. When I asked if it was similar to Down Syndrome, he told me “No, these babies don’t make it long.” He said I likely wouldn’t even carry to term, and if I did we would likely not have much time with our baby. After asking about the baby’s gender, and learning she was a girl, I asked for direction on how to help her. The only thing offered was an amniocentesis to definitively determine that she had Trisomy 18 (Nothing is definitive as false positives and negatives can and do occur). He said if it came back positive, I could terminate the pregnancy anytime and start over with a new pregnancy. Abortion was not an option for us. We wanted this baby no matter the diagnosis. At first, however, I was frozen in utter disbelief, shock, fear and darkness. I didn’t know where to turn.

After a few days of shock and more depressing info from Internet searches, my husband and I turned to God for help. He encouraged us to Fully Rely on Him for this journey. He reminded us that this baby was His creation and it would be ok… no matter the outcome. We went ahead and chose a name for her. We chose a powerfully long name and began bonding with “Sarah Catherine” since we didn’t know how long she would be with us.

I also remembered that we are the hands and feet of God. I couldn’t simply sit still and watch this unfold. I saw too many babies lose the battle with an inexperienced medical team. I had to do something to help. I grabbed a blank notebook to record information about Trisomy 18. I bought a Doppler to listen for kicks. I took high quality prenatal vitamins and DHA for brain development. I increased my protein intake, ate lots of healthy fats and drank lots of water. I took time to relax, and never stopped praying for God’s direction. I wanted no regrets, but trusted God to write the whole story.

Sarah Catherine - Full Trisomy 18

My doctors were somewhat supportive of my choices once they knew I wouldn’t terminate, but they continued to encourage an amnio which I turned down multiple times. I had learned, through this organization, that a positive diagnosis through amnio makes it even more challenging to get full interventions for babies with trisomy. If she made it to full term, I certainly wanted full medical interventions like I would want for any child.

After several visits to specialists, we realized the healthcare team didn’t have the experience with full interventions. They could only point us to comfort care or “wait and see” approaches. Like many in our shoes, doctors couldn’t help us plan for the possibility of life. I had a geneticist look at me like I was delusional in asking about full interventions…in trying to steer the conversation away from handprint kits and free photography for my poor child. She could not fathom that this child might live. I had another doctor chase me down the hall to make sure I knew about my baby’s additional diagnosis of Spina bifida. Still, another doctor told me directly “This is not a baby you can take home,” and “She won’t get married like your other children.” Does marriage really determine value?

As my head spun with these “medical” opinions, I quickly caught on that many doctors didn’t understand the value of life, the value of a child with Trisomy 18 whose kicks and hiccups could be felt daily. I needed a plan for success in case she proved them wrong, so I made calls to providers in 5 other states. We ended up leaving our hometown for care, and traveling to Omaha, NE where her cardiac surgeon, Dr James Hammel, didn’t point us to dated statistics, but instead simply said: “We will do everything we can for your child.” How refreshing! I arrived at 37 weeks gestation, and delivered our daughter, Sarah Catherine, via caesarean on June 6, 2019, at 39 weeks gestation. She weighed 4 lbs, 8 oz.

Sarah Catherine Lll

At birth, she was intubated and taken to Children’s Hospital & Medical Center. She had 4 surgeries in 2 months, which included 2 cardiac surgeries to correct Tetrology of Fallot including a Ventricular Septal Defect (VSD) and pulmonary stenosis. She also had two surgeries relating to Spina bifida. It wasn’t an easy 2 months, but Sarah Catherine proved that she was strong and resilient with each surgery. At exactly 2 months of age, she was discharged. We were prepared to stay in Omaha longer, but were blessed with a relatively short stay. We drove 1,000 miles home with Sarah Catherine in her regular baby car seat, a few 02 tanks, and a list of all the NICUs between Omaha and our hometown. The Medical Director of the NICU, Dr Nicole Birge, hand wrote a list of all the hospitals along our route. We made it home without needing any of them.

As we begin planning for her second birthday, we will never regret choosing full interventions for our daughter, and we will be forever grateful for fair care in Omaha. All our days are numbered, but our girl has taught us to be thankful for each new day. We see life through a completely new lens, and we know she isn’t an accident, a fluke, or a clump of cells – but a valuable part of God’s beautiful plan, and a daily reminder of what’s truly important.

Follow her journey on Facebook @carryingsarahcatherine

“Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.” -Jeremiah 1:5

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you HOPE and a future. -Jeremiah 29:11

Written by Farrah – Sarah Catherine’s mom