Molly’s Story
Molly’s story starts long before she was even born. Our plans for a second child were put on hold by the coronavirus pandemic in early 2020 and a very early miscarriage later that year. When we saw the “pregnant” result on the test in November 2020, it had been a bit of time coming. Needless to say, Molly was very much wanted and loved for a long time before she even was here and will continue to be loved despite her not physically being here.
In early January 2021, Shannon went for her first trimester ultrasound. At this appointment, we were blindsided by the finding of a cystic hygroma, which we learned could resolve on its own or indicate that “something” was wrong. There was no way to know from the first scan and the only thing we could do was move forward with more tests and scans to try and get answers.
Over the next few months, Shannon went back and forth to many appointments to monitor the hygroma. After the anatomy scan at the end of March, we were told that the hygroma had resolved and we were “in the clear”. We couldn’t have been happier, but also knew that there was a chance something could be wrong that we wouldn’t know about until this baby arrived.
About 10 days after the anatomy scan, Shannon had a routine fetal echocardiogram to make sure everything continued to look okay. It was not. The cardiologist found the heart to be shifted towards the right due to a suspected congenital diaphragmatic hernia (CDH). The stomach was also found to be up in the chest. We were referred to Children’s Hospital Of Pennsylvania (CHOP) for an evaluation to confirm. After more tests and scans the following day, it was confirmed that our Molly had a severe left-sided CDH. This was a lot to digest, especially after thinking we were in the clear just 10 days prior. We were given a lot of facts and odds, but also told that every case is unique so the numbers don’t always tell the whole story. After sleeping on it and having a tear-filled conversation, we knew we were going to fight like hell right along with this kid to give them the best chance they could have.
From that moment on, Shannon continued with more regular appointments to monitor Molly. At 32 weeks, we found out our little one was really little with intrauterine growth restriction (IUGR). However, over the last 7 weeks of pregnancy, Molly gained weight like a champ, going from less than 2nd percentile to 12th percentile a week before she was born.
She made it to her scheduled delivery date, and came out fighting! Molly Joan Connor Brusstar was born on July 19, 2021 via c-section at 2:07 pm, weighing 5 lbs 15 oz. and measuring 17.8 inches in length. She held on long enough to be placed on ECMO within a few hours of delivery to buy back some of the lung development time she was robbed of in utero. She had her CDH repair surgery a week after she was born, and recovered nicely from that. Almost three weeks after she was born, we had one of the scariest days in the NICU that culminated in her having an exploratory thoracotomy, allowing the little lungs she had to open up more. At 28 days, much to everyone’s surprise, she came off ECMO and held her own for a time.
As the days wore on, the effort to do the work herself became too much for her little lungs. Kevin said she’d let us know when all of the measures taken were too much, and indeed she did. On September 1st, after getting to meet her older brother and grandparents, and creating some memories too, Molly spent several hours in each of her parents’ arms for the first, and last time. She passed peacefully in mom’s arms that night after giving it her all. We were so proud of how she tackled every obstacle head on and we vowed to continue her fight in her memory, just as fiercely as she did. No matter where this journey took us, we always said that we were all in. Even though she is no longer here physically, we still feel her presence; she will always be a part of our family. We are all in for the fight against CDH. For Molly, our MoJo, every other CDH baby here and the future ones to come.
