Mom to Jonah
February 14, 2016 – February 15, 2016
I lost my beautiful son Jonah on Valentine’s day of this year. I found out he had an omphalocele at 12 weeks. An omphalocele is a fairly rare birth defect in which some or all of the abdominal organs are in the baby’s umbilical cord and do not go into the abdomen. Sometimes the birth defect is related to chromosome issues such as Trisomy 13.
I had a CVS at 13 weeks to rule out chromosomal disorders. The CVS caused me to hemorrhage at home. I was rushed to the hospital by ambulance. My local doctors couldn’t give me a reason for the massive bleeding but Jonah was still fine. I spent the weekend at the hospital and was told Jonah had an isolated omphalocele and it was more than likely treatable after birth but to expect a long NICU stay and possible heart & lung problems.
At 14 weeks I went to Texas Childrens hospital in Houston for a level 2 ultrasound. Jonah looked pretty good but we received even more devastating news. I was diagnosed with placenta accreta. My placenta was growing through my uterus and attaching to my bladder. That explained the massive bleeding.
I was instructed by 3 maternal fetal specialists to terminate the pregnancy as soon as possible because of the threat to my life. They also pointed out that because the baby had a birth defect the complications were high and he would be born early. My husband and I struggled with what to do. We already had 4 kids to consider and I was risking my life staying pregnant. Ultimately, I couldn’t terminate.
I was admitted to the hospital 40 miles from my home at 14.5 weeks. My doctor was afraid I would bleed out and die at home. I sat in the hospital for almost 2 months trying to keep Jonah safe until 34 weeks when he’d have to be delivered due to the accreta.
Unfortunately, at 23 weeks and 2 days I had a heavy bleed and went into labor. My doctor wouldn’t stop the contractions because he was worried I’d abrupt. We had to make a decision on whether or not to have the NICU intervene. We decided we didn’t want Jonah to suffer only to pass away later. We wanted him to go peacefully under the general anesthesia.
He was born at 10:14pm on Valentines day. I was in surgery for eight hours and had 5 blood transfusions. My bladder was resected, I had my uterus and cervix removed and stents placed in my ureters. I never got to see him alive. My husband held him as he took his last breaths.
We often question our decision to not intervene but after countless hours researching I can’t find a case of a 23 week baby with a giant omphalocele that survived. We try to tell ourselves we made the right decision but the “what ifs” are difficult.My due date is June 10th and my heart is heavy with sadness. I’m happy to be alive for my four living children but sometimes the grief consumes me and I wonder if I made the wrong decisions.
Thank you for reading my story.
Malea can be reached at firstname.lastname@example.org