Miller Family: Baby Miller’s Unexpected Diagnosis

Dillon and Amelia went in for the exciting 20 week ultrasound to see Baby Miller #3. Unfortunately, they heard words no parent wants or should have to hear, there was something wrong with baby’s heart. This lead to additional testing and Baby Miller was diagnosed with hypoplastic left heart syndrome (HLHS).

HLHS is a congenital heart defect that affects normal blood flow through the heart. This isn’t genetic. There is nothing to do to prevent it. As Amelia said, “it’s unfortunately something that can happen when growing something from the size of a poppy seed”. As the baby develops during pregnancy, the left side of the heart does not form correctly. The left ventricle is underdeveloped and too small. The mitral valve is not formed or is very small. The aortic valve is not formed or is very small. The ascending portion of the aorta is underdeveloped or is too small. Also, an atrial septal defect can occur, which is a hole between the left and right upper heart chambers (atria). Normally, the right side of the heart pumps oxygen-poor blood from the heart to the lungs and the left side of the heart pumps oxygen-rich blood to the rest of the body. Babies with HLHS, the left side of the heart cannot properly pump oxygen rich blood because of the restrictions. Severity of HLHS varies significantly. Treatment (not a cure) for HLHS is surgery in 3 stages - the first within 1 week of life, the second by 6 months, and the third between 2-5 years.

Over the past several weeks Dillon and Amelia have had multiple appointments with multiple specialities - OBGYN, maternal fetal medicine, Children’s cardiology, and palliative care. What they have learned is that Baby Miller’s case is very restricted but no lung damage at this point. At this time, the plan is for Baby Miller to undergo a cardiac cath procedure within hours of coming into the world. This will help doctors better assess baby’s HLHS to provide Dillon and Amelia with more information/recommendations of whether or not to proceed with the first surgery. They also plan to place a stent in the atrial septum to improve blood flow and hopefully stabilize Baby Miller to make it to the first surgery, if that’s recommended.

It has been life changing. It has been a rollercoaster with opinions and recommendations changing. The future is unknown. They have difficult decisions ahead that many of us can’t even fathom. No matter the outcome, they will be taking an undetermined amount of time off from work. It is our hope that they will be juggling life at home with their other 2 kids in Logan and life at Children’s Hospital in Omaha with Baby Miller and not the worse case scenario.

Dillon and Amelia are good people with big hearts. They’ve been there for many of us when life threw curveballs our way. It’s our turn to help them. So if you’re able, please consider donating to allow them to take the time off they need and unforeseeable future expenses (medical bills, gas for travel, hotel costs, etc). If you’re not able, then please keep them in your prayers or send all the good vibes their way.

❤️

Grandma Dawn, Nana Nancy

Aunts Amber, Kendra, Lindsay

P.S. For updates please follow their CaringBridge Page:

https://www.caringbridge.org/visit/babymiller3