When I woke up this morning I was greeted by several text and Facebook messages with a link to a breaking news story.
“Thought you might want to see this.”
“Saw this and thought you would be interested.”
“Thought of you when I watched this.”
The story was about Jimmy Kimmel. During the opening monologue on his show Jimmy Kimmel Live! last night, Kimmel opened up to his audience and the world about the birth of his son, Billy, on Friday, April 21st. What at first seemed to be a uneventful and typical birth turned out to be anything but.
Kimmel told the crowd that three hours after his son’s birth, a very attentive nurse noticed that Billy had a heart murmur and that his coloring seemed off. This discovery led to consultation with other doctors and nurses in the NICU of their hospital. Kimmel described the scene as everything unfolded, “And now, all of a sudden, it felt serious. The room started to fill up. More doctors and nurses and equipment started coming in.” He went on to describe the experience as “terrifying”. He explained, “I’m standing in the middle of a lot of very worried-looking people…who were trying to figure out what the problem is”.
After an X-ray determined that the baby’s lungs were fine, a pediatric cardiologist was called in. An echocardiogram was performed, and it was determined that Billy had Tetralogy of Fallot with Pulmonary Atresia, a serious and complicated congenital heart defect in which the pulmonary valve is completely blocked and there is a hole between the lower chambers of the heart.
Jimmy Kimmel said his newborn son was then transferred from Cedars Sinai Hospital where he was delivered to Children’s Hospital Los Angeles. On Monday morning a pediatric heart surgeon performed open heart surgery on the 3-day-old to open his pulmonary valve and allow blood flow from the heart to the lungs. Kimmel said the operation was a success, and that “it was the longest 3 hours of my life”.
So, why would my friends all be sending me this news first thing in the morning? Well, you see, I have been where Jimmy Kimmel was. Both my children have congenital heart defects, and my daughter’s story is eerily similar to Kimmel’s.
Like Kimmel, my daughter was born with a serious congenital heart defect, although her CHD was detected in utero. Her condition is called Tetralogy of Fallot with Absent Pulmonary Valve. So, where Kimmel’s son had a complete block of the pulmonary valve, my daughter had a poorly formed, essentially missing, pulmonary valve.
Like Kimmel, my daughter was taken to the NICU for further evaluation, although this happened immediately after the team in the delivery room stabilized her since they were already aware of her condition. I know the feeling of the room being filled with medical professionals and equipment, and feeling so tiny and insignificant amongst the chaos. I can remember trying to scan the faces of the room to figure out what was going on. I remember asking questions that did not get answers as the team frantically worked to make sure my daughter was ok. I remember the fear and confusion and terror of not knowing what is happening to your baby.
Like Kimmel, my daughter was transferred on the day of her birth by ambulance to a children’s hospital where she was admitted into the Cardiac Intensive Care Unit. In my daughter’s case, her heart was stable enough to hold off on surgery until she got bigger (she was only 4 pounds at birth), and she remained hospitalized for 54 days until doctors felt she was big enough to tolerate the surgery, and then another 12 days for recovery after some complications.
As I listened to Jimmy Kimmel describe his ordeal, I choked back tears. Not for me, but because I knew the pain he was describing. His words struck my heart and I knew the reality of his fear. I knew where he was so clearly, because I have been there.
I am so happy to hear that Billy Kimmel’s first surgery was a success. Like my daughter did, Billy is expected to have another surgery in 3-6 months, Kimmel said. He is also expected to have another procedure down the road (hopefully in his early teens, according to Kimmel) to replace the pulmonary valve. We are currently waiting for the word that my daughter will need her valve replaced.
I am thankful to Jimmy Kimmel for speaking out and sharing his story. Over the last several years, I have been working to raise awareness of congenital heart defects. CHDs are the most common birth defects, and yet so many people are not aware. By sharing his story to his audience of millions, Kimmel is advancing CHD awareness in a huge way. Kimmel also used his platform to discuss the importance of health care coverage for families of children with medical issues like congenital heart defects. My family is also lucky that we have good medical insurance coverage, and this is not something we needed to worry about when my daughter had her surgeries. Hospitalizations and surgeries are insanely expensive, and as Jimmy Kimmel said, “No parent should ever have to decide if they can afford to save their child’s life”.
Thank you, Jimmy Kimmel, for your honesty and bravery in sharing your story and advocating for others in need.