We are participating in the Philly Spin In because we want to support CHOPs Cardiac Center.
It was my 19 week ultrasound and I was so excited to find out if I was going to be having a girl or boy! I was busy baking cookies, making decorations, and thinking about what color I was going to paint the nursery. I had no idea what awaited me at that doctors appointment. I had no idea that from that moment on, my life forever be changed. Our life would be different than we expected, different than “most”, not at all what we planned.
The nurse practioneer told me they didn’t get all the pictures they needed. That I needed to go to CHOP for more pictures where they have different equipment. What she didn’t tell me that day was that my sons left ventricle was smaller, that it was underdeveloped, and likely it was a rare congenital defect called Hypoplastic Left Heart Syndrome (HLHS).
Monday morning came, I went to work as normal, then headed out to CHOP where we would later get the diagnosis. The technician looked me in the face and said “I have to tell you, we did find something with your baby’s heart. The doctors will explain further in the next room.”
We went into a room to meet with the cardiologist, nurse practitioner, and social worker. They sat us down with pamphlets full of information regarding HLHS. They thoroughly explained what was going on in our son’s heart as they showed us the diagrams. It was all too much. They were very thorough, however, they were equally positive, they explained how much things have changed over the years and how these babies are now able to live long lives. They asked if we wanted to proceed with the pregnancy, and that was the start to our journey.
At this point in our story, CHOP fully took over my care and I went to all of my appointments in Philly. Liam was born at CHOP in the Special Delivery Unit in February 2017. I am so grateful for this unit. I labored for 9.5 hours when Liam’s heart rate dropped, oxygen saturation dropped, and we found out the chord was around his neck. If it was not for the SDU, I don’t believe Liam would be here. He was delivered in less than one minute by emergency C Section. It was a true emergency. And Liam Benjamin mills was a true miracle.
He was stabilized and then immediately brought over to the Cardiac Intensive Care Unit (CICU). Liam’s first surgery was at 3 days old, and the amazing Dr. Spray went in and rerouted Liam’s Heart with the Norwood procedure. This surgery was very successful and Liam had a quick and amazing recovery. We were out of the hospital in two weeks.
Liam’s second surgery was on May 30. During this surgery, Liam experienced bilateral diaphragm paralysis. This was extremely uncommon and not something that anyone had much experience with. Liam was hospitalized for two months and on a ventilator for 6 weeks as he could not breath on his own. Liam and I lived in the CICU for the hospital stay. My husband was fortunate to be able to work from the hospital and stay at a nearby hotel that was affiliated with the Ronald McDonald house.
During this stay, CHOP became our home.
We learned the ins and outs of the CICU and we got to know some of the staff pretty well. Liam’s wonderful cardiologist Dr. Ravishankar started and ended her day by visiting Liam and us. Every single day. She was amazing. We are so grateful and so blessed for Liam to be under her care.
Liam’s diagrams spontaneously healed with no medical explanation . He had a full recovery and suddenly began breathing on his own. It was a true miracle we witnessed.
We are so blessed by our baby boy. By his strength, his courage, his ability to fight day in and day out. We will forever admire him. We will forever be scarred by this hospital stay. But also be blessed by it. We all grew so much. We grew as advocates. We grew as parents. We grew as a family. We grew our faith. We are so blessed.
We are so grateful for CHOP taking care of our baby, for keeping him alive in such a critical time, and for meeting all of our needs. It’s very hard to put your babies life in someone else’s hands. But we are so grateful that we live so close to this facility that takes care of these babies each day, that operates and rerouted these little hearts, and that gives these children a fighting chance to live a fulfilling life.
Nothing is perfect. Life is not perfect. We all need some revamping. We all need some support. Life with CHD is not an easy one. 1 in 100 children are born each year with some form of CHD. Unfortunately, there is little to no government funding for CHD research. Nearly all research and funding to better these children’s future must be done privately. A lot of research and funding is done by fundraising and donations. So here’s our chance to fight for Liam, and other children like him! Here’s our chance to give these kids a future.
We are raising money to raise the spirits of our patients by supporting cardiac research and care at Children’s Hospital of Philadelphia. Join us at a big workout to help little hearts.
By donating and helping us support the little hearts through ground breaking and innovative research here at Children’s Hospital of Philadelphia.
“From the bottom of all the hearts we touch, from the bottom of all the hearts we work on, from the bottom of our hearts. Thank you.”
— Stephanie Fuller, MD, Cardiothoracic Surgeon