We are all compatible with love…
Featured Story: Charlotte
Age: 4 months
Charlotte’s Story:
“Charlotte was prenatally diagnosed with Trisomy 13/Patau Syndrome. We got NIPT results back at 27 weeks that we were high risk, we opted for the amniocentesis and fetal MRI to confirm at 30 weeks. Our doctors said she likely wouldn't survive the pregnancy. We had a growth ultrasound on May 16th. She was growing so well, but I was starting swell and become hypertensive. They advised us to induce, which we scheduled for May 24th. When we got to the hospital the doctors and their fellows all came in and out of our room. One told us that Charlotte would never make it to the delivery table. Others told us we would be lucky to have a couple hours with her. She was born May 25th at 1:19 am; Charlotte was 6 lbs and 6 oz. She was breathing on her own and crying. It was the most wonderful sound. They laid her on my chest and Christopher cut what was left of her disintegrating cord. After a few minutes they took her to the NICU, where she was visited by a pediatric surgeon that heard of her small tightly bound omphalocele. When I was able to get up, Christopher took me to the NICU. While we were there, the pediatric surgeon came to speak to us. He and Christopher agreed it was in her best interest to have her omphalocele repaired ASAP. This is when the friction between her neonatal team, the surgical team, and us started. The neonatal team halted the OR prep and said she wouldn't be going.
The surgical team came in and took over finishing the prep themselves and took her to OR. She had her omphalocele repaired successfully and that was the last success she had at her birth hospital. Her neonatal team failed her over and over again, overdosing her on a medication that was prescribed to her by mistake, causing her to become critically ill. They then blamed her illness on the Trisomy 13 and tried to convince us to switch to comfort care. This was after repeatedly writing her down as DNR and DNI; withholding nutrition for hours and days on multiple occasions. We kept asking questions and insisting on interventions that kept being refused because they said it wasn't worth it due to her Trisomy 13. We refused to give up on our sweet girl. We reached out to an amazing doctor in another state that advocates for our kiddos, and he agreed to become Charlotte's formal second opinion physician. He helped us get in touch with another amazing doctor that agreed with us about the airway intervention. That is when the battle to have her transferred to Mott Children's hospital began. On July 1st she was flown to Michigan. Charlotte received her tracheostomy the day before the SOFT conference, her surgeon performed it himself before he left to appear on the expert panel at the conference the next day. Her surgery was successful and she spent the next week and a half recovering in Michigan. On July 24th she was then transferred back to our home state of Indiana, this time to St. Vincent's women's hospital NICU instead of her birth hospital where she is thriving. She received her G-tube here. She rocks her PT and OT. She is on CPAP mode on her machines. Charlotte is over 13 lbs now. She is a warrior princess, one who has an estimated discharge date of October 8th.”
How has your child positively impacted your family?
“She has brought us even closer. We have always tried to stay positive, but she has made us focus on the everyday wins and has taught us to cherish every moment with not just her but also with each other. We don't take time together for granted at all now.”
Advice for medical professionals:
“Listen to parents, respect us, and don't be condescending. If we have questions, answer them truthfully. If you don't know something, tell us. Transparency is important. Trust can be broken. Don't try to comfort us and act empathetic while withholding information from us.”
Advice for other parents navigating this journey:
“Do your own research, and if you don't feel up to it alone, reach out to the trisomy community, there are people who can and will help you on this journey. You do not have to isolate, you are not alone.”
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