Riley Marie’s Heart

The story of Riley and her special heart began before she was even born. Here is the story from the beginning along with a brief update by her mom:

We found out that our baby was a girl at 18 weeks due to a quick unscheduled ultrasound. So when it came time for our 20 week anatomy scan we were excited to see our girl on screen but thoughts that we’d find out something big that day were not there. We were told that our baby girl, Riley Marie, has a congenital heart defect known as hypoplastic left heart syndrome. We met with a high risk ob/gyn that day and they confirmed. Devastated cannot even begin to describe what we were feeling…

A week later, yesterday, we met with a pediatric cardiologist who performed an extensive ultrasound and Echo on our baby’s heart. She was so wiggly during it that the Dr. had the hardest time looking at her heart! She is growing perfectly otherwise and continues to be right on track with growth. They again confirmed the diagnosis and drew us a picture to try to explain what it all meant. To explain it in a very simplified way Riley’s left side of her heart is extremely small and underdeveloped to the point where it will never be functional. There is no way to change that but instead she will have 3 surgeries to help the right side of her heart function for the left side. We are definitely still learning and trying to understand all of this. We have decided that I will deliver at St. Vincent’s hospital and she will have her surgeries at Peyton Manning’s Children’s hospital. She will be in the NICU after she is born until her first surgery which is usually within 5-14 days after birth. We learned that there is nothing that caused her to have this and that nothing we did or didn’t do caused it. We are truly blessed to live in this time where there has been so many advances with the surgeries as all of this technology around hypoplastic left heart syndrome is only 30 years old and before that the survival rate for these babies was not existent.

Riley was born on March 9th and had an atrial septostimy right after birth. She had her Norwood which was considered a high risk Norwood on March 19th. She came back from surgery on ECMO and was on for 4 days. They took her off of ECMO due to severe bleeding. She was not ready to come off ECMO and struggled to keep her sats up for the next week. That week was filled with many events where they would push epi and fluid to bring her bp and sats back up. On April 1st she was unable to keep her o2 sats up even with meds to the max and vent setting to the max so she went on ECMO for the 2nd time, this time neck cannulated. She was on ECMO for 16 days. During her ECMO run she had a heart cath which was a high risk cath with her on ECMO. They did not find anything that they were able to fix during that like they had hoped. The night that she came off of ECMO they did a head ultrasound and found that had had a brain bleed. After hooking her up to the EEG they found she was having seizures. She started a seizure med that stopped all seizure activity. The brain bleed had stopped but they decided to put a resevior in to be able to “tap” into with a needle to take excess fluid off of her brain. She continued to need the resevoir tapped often so they eventually put a permanent shunt in to drain the excess fluid into her belly. An MRI showed that Riley has brain damage in the areas of vision and gross motor skills. As of right now she is moving all of her limbs and focusing her eyes. The Neurologist is very impressed by her and said that it shows that you never know with a baby what their brain is capable of. Riley is currently in the step down unit and we are starting parent care to go home soon. She will have her 2nd surgery later this year. Riley Marie is nothing short of a miracle. We are so grateful for the drs and nurses who have taken such good care of our girl. They never gave up on her!

To follow Riley’s journey go to:
Riley Marie’s Heart on Facebook or their YouCaring page

A special thank you to Lori Maragson Photography for the beautiful images she provided for this family.