Join us this week on the CDH Radio Show, as we talk with Kelsey Yetmar as she shares their family’s journey with CDH after their son Thomas was diagnosed.
Tune in at 6:00 pm EST tonight, June 22, 2021 to https://www.blogtalkradio.com/cdh/2021/06/29/62921–family-of-thomas-yetmar-on-this-weeks-cdh-radio-show.
Listen to archives of the show at http://www.cdhradio.org.
Kelsey had this to share about her pregnancy and CDH diagnosis with Thomas, “I had two prior healthy pregnancies and went in for a 20-week ultrasound with the 3rd pregnancy and thought it would be quick in and out since everything looked perfect until the tech kept going back to the heart. The Doctor met with us and said it was CDH and it would be fine and our son would just need help breathing when he was born.
We waited a full week to get into a specialist who then told us he would terminate or we could go to Iowa City, he did clarify he only sees 1-2 cases a year. We went to the University of Iowa where we were reminded that TFMR has to be done by 21 and 6 days which was the next day. The hard part was they said they don’t really know until a baby is born.
We attempted to participate in a clinical FETO study at Mayo in Rochester, MN but after two full days of testing a microdeletion was discovered through microarray and did not allow us to continue. Thomas had a De Novo 8p23.1 microdeletion, but he did not have any other anomalies aside from severe LCDH.
In the end after exhausting all of our options, we made the decision to elect for comfort care. It was hard to come to terms that we weren’t making a decision to do nothing, but that we were making a decision that was in the best interest of our child with all of the information we had.
I have to say the hardest thing was receiving that initial diagnosis at the 20 week appointment. Then the subsequent devastation of every appointment becoming more grim and realizing you have exhausted all options and can’t fix the situation as a parent. Overall with the grief I have been able to identify more of the triggers, but it is still there and seems to be triggered more so with going through pregnancy again and the paranoia something could go wrong again.”
Thomas is going to be a heavenly big brother; his sister is due to arrive this September, so far no concerns of CDH or micro-deletion.
