Hannah’s Story
O Warrior Stories
Written by: Michelle Stephens
My daughter’s name is Hannah meaning favored by God. Her O is just a small part of her story but it’s where our journey down this unexpected road began. She was diagnosed at 12 weeks gestation and I thought the doctors were wrong. We were told our daughter had an omphalocele and I needed to see a specialist. I had to ask the doctor to write it down so I could look up a word I had never heard of in my life. I found little information and what I did find online was very negative. But my husband and I put our trust in God and prayed for a miracle of healing.
God had something different in mind for our Hannah. At 24 weeks gestation, she was diagnosed with a Congenital Heart Defect called DORV with a large VSD and pulmonary stenosis. At that appointment we were told surgery would be definite and emergency surgery after birth would be probable. We were hit with another large blow, but our hope did not waiver. We knew God had a plan for our Hannah though we couldn’t understand why this was happening to us. I experienced so many different emotions during my pregnancy. I even started to blame myself for her birth defects. I couldn’t understand how everyone else I knew was having healthy babies. I tried to stay as positive as I could despite what the doctors told us but it was incredibly stressful. So much was unknown until her birth and it didn’t help that the doctors told me she could come earlier than expected.
Starting at 32 weeks, I began seeing the high risk doctor once for ultrasounds and my OBGYN for non-stress tests weekly. Before every ultrasound appointment, I would pray for her to still remain in utero. Fortunately, Hannah was born on her scheduled C-section date at 38 weeks. We were originally told her O contained her stomach, bowel and part liver. At her birth, the O only contained her bowels and partial liver! She did not require emergency surgery but did need oxygen and was placed on a ventilator. I didn’t get to hold Hannah right after her birth and I was prepared for that. All that mattered was that she was taken care of.
Her O was surprisingly repaired at 3 days old. I held my fragile 5lb 13 oz baby for the first time13 days after she was born. We were told we would be home in a month. We never expected the months that followed. Her total hospital stay was 231 days. We discovered 2 additional birth defects- Bronchomalacia and hip dysplasia. That lengthy stay included 3 additional surgeries- a feeding tube placement, a heart surgery to close the hole in her heart and a tracheostomy along with 1 code blue for aspiration where she was revived after 2 minutes of being unconscious. We happily went home in September 2020.
After a year of being trached, there was no improvement in her condition. An MRI showed her thoracic aorta compressing her left bronchus, causing it to collapse. At 20 months old, she underwent her 5th surgery for open heart and airway reconstruction allowing her to start coming off the vent. She is an O warrior and a 2 time heart warrior. Hannah is now three years old. While she still has a trach and a feeding tube, she is a thriving and doesn’t let anything stop her from enjoying life. Our home is a mini hospital with multiple machines and 24/7 nursing. Our schedule is filled with appointments and therapies on a weekly basis. I have learned more medical terms than I ever thought I would need to know. One day she won’t need any of the accessories she has now and she will be a healthy little girl with the scars to prove how strong, resilient and brave she is. It’s not a lie when you hear these babies are miracles. I know for a fact that mine certainly is. We are truly blessed.
