I haven’t been able to watch the entirety of Jimmy Kimmel’s monologue regarding his infant son, Billy. I can relate to every feeling that he was having as I had those same thoughts and feelings 17 years ago when my own son was born with Tetralogy of Fallot. I’m deeply grateful to him for sharing his story – it shines a spotlight on Congenital Heart Disease — which affects 1 in every 100 babies born in this country. And, it brings a familiar face to the forefront of an incredibly important conversation our country is having right now with regard to health care and pre-existing conditions.
“No parent should ever have to decide if they can afford to save their child’s life. It just shouldn’t happen. Not here.”
Not anywhere. But especially not here. And, the argument doesn’t stop at simply denying or allowing coverage for pre-existing conditions. It must be affordable to the people who need it, or it is irrelevant.
Our hearts go out to the Kimmel family. It’s an overwhelming wave of emotion and despair when you get news like this. We are praying for Billy and his team of healthcare professionals.
You can watch the powerful video here.
William Jacob Brown – “Jake” was born on September 17, 1999. He was 7 weeks premature, but otherwise healthy….or so we thought until September 20. It was then that we discovered Jake had a congenital heart defect called Tetralogy of Fallot (TOF).
Our world crumbled that day. We didn’t know why this had happened or if Jake would even survive. We vowed that we would do whatever we had to do in order for Jake to live a normal life. But getting there meant we had some hurdles to clear.
We are not doctors or medical professionals. We are simply parents who have been there. We hope this blog will help give hope to other parents who are just starting the journey.
Jake is now a normal, active and relatively healthy 17 year old. He currently has no activity restrictions and is a wrestler at his high school and is working on his 1st degree blackbelt in karate.
The Chosen One
I had a dream the other night,
It came to me so clear.
I stood before the throne of God,
afraid to come too near.
God said to me “I hear your prayers,
there’s answers you can’t find.
I asked you here to talk to me
and help to ease your mind”
I said “Well yes God, I am disturbed
about my special one.
That punishment is awfully harsh.
Whatever have I done?”
God looked at me and shook his head
and said “You’ve got it wrong.
I sent this special child to you
because you are so strong”
“I searched and searched to try and find
someone with love so rare.
A parent so unselfish they could
give that special care.
I try and save my special gifts
like those your speaking of
for special kinds of parents
I call the chosen ones”
Of all the ones to choose from,
I think this I have done.
A parent who deserves my best,
an honor you have won.
Yesterday we had Jake’s annual cardiology appointment. It’s turned into a tradition to go on President’s Day since we all have the day off. I generally am in charge of doctor appointments but I don’t like to go to the cardiologist alone.
As usual, Dr. Hougen impresses the heck out of me. He is truly a wonderful doctor. He is unpretentious and has a wonderful bedside manner. He and Jake talk baseball every year and make predictions about the upcoming season.
Since Jake was 2, we’ve gotten the “see you in a year” speech. This year, things were different.
The EEG and the echocardiogram were “normal” for Jake. As with most Tetralogy of Fallot patients, he has leakage in his pulmonary valve. We’ve always been told that its possible he will have to have it replaced someday–and someday may be coming in the next several years. While there was nothing alarming in the echo, Dr. Hougen explained that he needs a cardiac MRI to really get the best look at the valve and the right ventricle. He said that they have really figured out that its really important to be pay attention to that right ventricle.
So, there’s nothing to be concerned about and certainly nothing is imminent. But it’s a reminder that even though Jake lives a normal healthy life, he has some big issues that he will always have to deal with.
It’s important to note that although Jake’s valve is leaky and there is a possibility of future surgeries, it doesn’t mean that his repair surgery wasn’t good. Quite the contrary actually. Dr. Hougen remarks every year that his repair was excellent.
I will say that I am very grateful that there is a generation of adults ahead of Jake who are living with Tetralogy of Fallot. They are paving the way for kids like Jake to live long, healthy lives.
I’ll update after the MRI.
Today is Jake’s 12th heart birthday. You can read my thoughts about this day here at my personal blog.
We had Jake’s annual appt on Feb 20th. Dr. Hougen continues to be one of the best doctors we have ever had. There was no need for an EKG, this year, but he did do an echo. He and Jake talked baseball during the proceduire. As a mom, it is so wonderful to see your child having a grown up, intelligent conversation with another adult. I’ve seen so many kids at this age who can barely make eye contact with adults, so it always makes me proud of him. But in this context, it brings tears to my eyes because I am so aware of what a miracle it is that he is even with us today.
Dr. Hougen once again praised the surgeon who did the repair. Last year, we were told that the ASD had close completely. This year, he said that the VSD had also closed. Dr. Teodori had left the holes slightly open at the repair because they were afraid that Jake’s tiny heart could not have handled the pressure of closing them. We have no way of knowing what would have happened if they had closed them completely, but in my heart, I know that it was the right decision. At the time, Dr. Teodori said that they would likely close on their own, but if not, he could live with it. Now, 11 years later, my son no longer has a hole in his heart.
Dr. Hougen explained the echo to Jake, who was very interested in the mixing of the blood that occurs because of the leakage that still exists due to his compromises pulmonary valve. The leakage causes his right heart to have to work a little harder, so monitoring that leak and the condition of the muscle is the main concern at this point. The possibility of replacing his valve is still there. I remember the 13 year old girl that we met at the hospital when Jake was having his repair. She had TOF as well and had her valve replaced the same day as Jake’s repair. We ran into her at the cardiologist’s office a few weeks later and she was doing great. She would be about 24 or 25 now. I often wonder how she is doing and I wish I could tell her how much peace and hope it has given me through the years to have met her. She and her family were truly a gift from God.
I pray that Jake’s story can provide that same kind of hope to parents who are just starting out on this journey. Yes, I would change it if I could…of course I would. But, I am so grateful for the amazing person that he is and the joy that he has brought to the lives of people who know and love him. And I know that our experiences shape who we are….so in that sense I can say that I’m at peace with the way things are.
So our orders were to keep living life with no activity restrictions and to come back in a year. Dr. Hougen and Jake are looking forward to talking about the 2012 baseball season at his appointment next February.
And with that, we are off to Florida to catch a couple of spring training games…just living life as prescribed. And, life is good.
This year’s annual appointment was again very routine. Our new cardiologist, Dr. Thomas Hougen is wonderful. I have found that pediatric cardiologists are among the most personable of doctors and Dr. Hougen is no exception. I do think that he is the cream of the crop, however. I have never been happier with a doctor.
He did an EKG and an echo. Nothing has changed in terms of Jake’s overall health. We continue to watch his leakage, which is still there but not causing any issues. Most amazing of all, he said that Jake does not have an ASD any longer (hole between the right and left atrium, which is separate and distint from TOF), which means it closed up on its own. He actually had to look back in the files to confirm that it was indeed there to begin with.
I’ve said it before, but “we’ll see you in a year” is music to our ears.
Sometimes June 5th passes me by with absolutely no notice. This year, it was the first thing I thought when I woke up. It has been 9 years since I handed my baby boy over to the nurse in the hospital. It was a hot summer morning in Phoenix and the hallway was bright. I remember he watched me as the nurse took him into the operating room and all I could do was ask Jesus to be with him and tell him it would be okay and help him not be scared.
I remember friends and family waiting with us. I remember how tense it was whenever we would get a call with an update. I remember with vivid clarity the nurse who came out to tell us that the surgery was over and they were sewing him up. She was petite with short brown hair and very compassionate eyes. This is all remarkable because I don’t remember much from that year. I can barely remember yesterday. But, the thing I remember most is an absolute confidence that my baby was going to be okay. I knew it.
It was touch and go for a few days, but within a week, he was out of the hospital and we were ready to move on with our life.
Today, the scar is pretty faded and if you didn’t know about his rough start, you probably wouldn’t. He’s vibrant and full of energy – just as an almost 10 year old should be.
Jake had his annual appointment with the cardiologist yesterday. He had an EKG and and echocardiogram. The doctor said there is no function change since last year….everything is status quo. That is music to a mother’s ears. He goes back next year, but only for an EKG. No echo until he is almost 12 (gulp), unless anything changes.