A Remarkable Heart, a Remarkable Boy

Owen was born with 4 congenital heart defects. Two are incredibly rare; truncus arteriosus and interrupted aortic arch and two are more common; VSD, and PDA. Truncus affects 1 in 10,000 births and there are only about 250 cases in the US each year. Interrupted aortic arch (IAA) affects 2 per 100,000 babies. Both of these are serious, or known as "critical" defects. They require immediate surgery or they are fatal. Patent ductus arteriosus (PDA), however, is one of the most common congenital heart defects. About 3,000 newborns are diagnosed with PDA each year in the US. Ventricular septal defects (VSD) are also among the most common congenital heart defects, occurring in 0.1 to 0.4 percent of all live births and making up about 20 to 30 percent of congenital heart lesions. Sometimes these defects are related to an underlying chromosomal abnormality. For Owen, the cause of all 4 is completely unknown.

This is the story of how we came to learn about our sweet boy's remarkable heart.

We learned of Owen's heart condition by mistake. I had a perfect pregnancy. There were days in the pregnancy, especially those early days, that I didn't even feel pregnant! No morning sickness, not one stretch mark. All of my appointments were easy and I wasn't even considered "high risk" even as a "geriatric" pregnancy (why is that a thing??). I was thrilled to be pregnant again and so excited to be growing our family. I was so grateful for my body and for the little life that was growing inside me. I did all the things. Took all the belly pictures, read all the books again, cut out all the caffeine, took all the vitamins, hired the doula, planned the dream birth, set up my dream nursery. Things were going so well!

At my 20 week anatomy scan, the sonogram tech mentioned that she couldn't get a good view of one side of his heart. She said he was lying transverse so she had me get up and do the requisite jumping jacks and belly jiggles to get him to move around. Still can't quite see it...come back next week. At the repeat scan I was told they got the images they needed--praise God! We were told the findings were "unremarkable."

At my 36 week appointment I met with the OB to discuss my plans for delivery. Elliott was born breech through cesarean, this baby (whom we still hadn't named by the way) was going to be a vaginal delivery (VBAC). We talked through the birth plan, the risks and benefits. She made mention of a growth scan but felt it wasn't necessary since my pregnancy was again, so "unremarkable". We left feeling good, just like all of our appointments. Then a week later I get a call. Mrs. Longmire, I would like to schedule you with our high risk doctor for a growth scan, after all. She said that after looking at my chart she was concerned about my weight gain. She said that I had gained 55 pounds! Stunned, and admittedly a little offended, I assured her that was a mistake. I knew I was just shy of 40 pounds of pregnancy weight but agreed to come in for a scan anyway. I was excited to prove them all wrong and any chance to see my sweet boy again, I'd take!

The morning of the scan, I was entering my 38th week. I was ready for battle--no one tells me I've gained too much weight! Also, I did fear they'd try to talk me out of my VBAC plans (growth scans are notorious for estimating big babies that end up being much smaller at birth). The scan was easy, I laid there and looked at the images, made note of the amniotic fluid levels--normal, the estimated weight--about 6 1/2 pounds, the head size--normal. Baby was head down! Relief washed over me. Then the high risk doctor herself came in and wanted to "just have a look", she said. And she looked. And kept looking. And then she said it.

"I can't see one part of the baby's heart."

"You need to see a cardiologist tomorrow."

"You may want to do some genetic testing."

"Here's the address of the clinic, it's at the German hospital in Homburg."

The next day, I saw the cardiologist at Homburg.

"There's something wrong with his heart."

"He might need medication, or maybe a procedure, or maybe surgery."

"You should probably deliver him here so we can check right after he's born."

The rest of that day was filled with lots of questions. Was something really wrong? Could they be wrong? Where should we go for the birth? What options do we have? We didn't think we would have to make any decisions yet; he wasn't due for another 2 weeks.

The next day my water broke and our little warrior was born 24 hours later. I'll write about Owen's birth in another post, but for now, since I am writing this after his passing, I will conclude by saying that the most courageous little boy came Earth side on Thanksgiving and went back home on New Year's Eve.

And everything about him is remarkable.