Ava’s Medical Journey
Ava is a medically complex preemie, born August 28th, 2018 at 31+4 weeks. I became high risk when I was 12 weeks pregnant and found out she was missing a bone in her right forearm. Her diagnosis was confirmed at 16 weeks and I also found out she had a complex cardiac defect. At 19 weeks her heart defect was diagnosed as Tetralogy of Fallot and I continued to have frequent appointments. My water broke the morning I was supposed to begin twice weekly monitoring. Within half an hour of getting to the children’s hospital, I had to have an emergency c-section under general anesthesia due to her heart rate crashing. She spent 69 days in the NICU, was home for 2 weeks, then had a seizure and was readmitted for a total of 97 days. Her NICU stay was full of IVs, medications, blood transfusions, x-rays, ultrasounds, MRIs, CT scans, a liver biopsy, 2 HIDA scans, bradycardia episodes, de-sats, etc. It was an incredibly emotional and trying time. At one point the doctor told me wasn’t sure if she was going to make it. She had surgery for duodenal atresia the day she was born and a g-tube placed, and surgery for TEF/EA three days later. She had open heart surgery on February 27th for Tetralogy of Fallot with severe pulmonary stenosis and DORV. Surgery went well but recovery was complicated. Ava went into severe respiratory failure and needed a cath lab the next day. She had severe lung disease and got breathing treatments 4-6x a day. She coughed so hard and extubated herself one day which was a really scary morning. And then went into severe withdrawal from the continuous fentanyl pain medication which required additional medications to slowly wean. She’s been home since mid-March and doing relatively well. Ava’s had multiple g-tube infections and leaks/bleeding. She is now on anti seizure medication too. Her next heart surgery is in 2-3 years to replace her valve.
Ava has right radial dysplasia or radial clubhand. There are 2 or 3 surgeons in the entire United States that can do the procedure she needs - Ulnarization. The best time to do surgery is between 12-18 months. We would initially fly to Baltimore to see Dr. Standard for a consultation. Then there is the pre-surgery appointment, followed by surgery. Ava would have an external fixator on for 3 months and then we’d fly back for removal and she’d get a cast. We live near Portland, Oregon so this requires us to fly to the East Coast multiple times. We’re unsure how long her recovery willbe due to her heart condition (which will require antibiotics before surgery) and being a preemie. Ava has VACTERL which is sequential rather than genetic: she has the C - cardiac, TE - esophagus, and L - limb anomaly. We have been a one income household because I am a stay at home mom now and have been to take care of her since she’s been born. We have to be careful about germs because she could become hospitalized again and get extremely sick/succumb to the illness. It’s just her reality. The journey with her has been long and hard. Admittedly, I’ve been suffering with PPD, anxiety, and PTSD from it all. All I want is for my daughter to have the best life possible and be happy and healthy. If I could give her my arm Iwould! She will always grow up knowing how loved and special she is. But just because we love her doesn’t mean she will be immune to bullying in the future. Kids (and adults) can be cruel. The last thing I want is to have my daughter crying because someone was making fun of her arm. Ulnarization would reposition her hand into a normal position and allow 100% more functionality. Speaking with other families who have had this procedure done, every single story is positive. We chose Dr. Standard for many reasons and believe he is the best fit for Ava. I have reached out to her insurance and we’re not sure it will be covered. The surgery itself costs around $50,000 and then we have to take into account the length of the hospital stay. Along with travel expenses, room accommodations, etc., the cost will add up. But we know that this procedure will change Ava’s life and allow her to do so much more and let her use her right hand as she does her left.
It’s hard to ask for donations, but we feel in our hearts that this procedure is right for her. We thank you for your contribution to getting our daughter to Baltimore. And above all, please pray for her! Thank you so much for reading our story. God bless.
