Nineteen years is a long time to do … anything. Be married, have the same employer, or be a parent. But 19 years is especially long when you are the parent of a child with serious congenital heart defects (CHD).

Our family has never liked the word “defect” but we realize that is the most appropriate word. What my daughter has is not congenital heart “disease”….it was not acquired…it was merely a hiccup in the creation process. God knows what He is doing at all times and we are okay with that.

Nineteen years ago this week our daughter was born with Single Ventricle, Transposition of the Great Vessels, and Pulmonary Stenosis. She was whisked away about one minute after she was born and the whirlwind has seemed to continue for the most part…with some lulls along the way.

In 1991 there was no internet access and we were clueless about what this diagnosis meant. Perhaps that was a good thing. We listened to the physicians and took their advice to try to raise our little girl to be as normal as possible.  We knew it was “serious” but didn’t have any idea with 19 years might bring. Actually, we didn’t know if we would have her with us for 19 years.

She was our first child so we were also clueless about being parents and what it meant to have a baby. We just dealt with things as they came…same way we do it today! We made it through her first surgery at 3 months of age. Then her second at 3 years of age. And then her 3^rd, 4^th, 5^th, 6^th, 7^th, 8^th, 9^th, and 10^th surgeries also. No matter how old your child is, it never gets easier handing her over to a team of physicians who will put her under anesthesia and operate on her.

If you have read any of our entries before, you know that we have a positive attitude about CHD and life in general. What choice do we have? As I reflect on 19 years though, the diagnosis of CHD certainly has its valleys. Yes, our CHD children are living longer than they ever have in the past thanks to research, medicines, etc. But with that longevity comes many more unknowns. Lately we have been getting calls from our college age daughter because she keeps getting new and weird symptoms. Dizziness is the main one right now. Yes, she has seen many doctors and had many tests. But, as is the case so often, these are uncharted waters and there aren’t necessarily any solid answers. Adults with CHD are a new phenomenon.

CHD sucks.  It’s hard for a young adult with CHD to face their own mortality on a regular basis. It’s hard to have symptoms every day reminding you of defects. It’s hard to have physical limitations. It’s hard to try to explain your situation to new friends in college. It’s hard to have to grow up so fast. It’s hard to be “normal.”

But as we have done for 19 years, we must go on reveling in each day that comes along. We have to go into overdrive to get through those valleys and back up to the top of the hill to enjoy the sunny view. Life doesn’t stop for CHD. Sometimes those valleys are few and far between. Sometimes they seem to last forever. But CHD parents and “kids” have to understand that after the valley comes a great view on top of that mountain. And a great view it is. CHD kids appreciate that view more than most people.  

What advice can I give my 19-year-old daughter? Even though I have had a lot of life experiences, I don’t feel right giving her some great insights into her future. How can I relate to what she is going through? All I can do is be there for the ride. I can strap in, hold her hand, and laugh along the way. I can try to help her go into overdrive to get back on that mountain top. I can empathize. I can love her every day.

She is an adult…with CHD.

As much as I like to tell people that we have always dealt with our daughter’s Congenital Heart Defect head-on, there have been a few times where things have been more tense and emotional and less “clinical.” This is a story about one of those times.

My daughter began to have arrhythmia problems in 2004 (around age 13) as a result of her earlier cardiac surgeries (BT Shunt and Fontan). One of the measures taken to analyze and treat her rhythm problems was to try Ablation.

She had two ablation procedures done in Indiana which didn’t result in any help for the rhythm troubles. We decided to go to another hospital where she has had surgeries – the Mayo Clinic in Rochester, MN. Since we have always treated her heart disease with a certain degree of resolve, I stayed home with our two younger children while my wife and daughter made the long drive to Minnesota.

They got settled in to a local hotel, had dinner at a favorite Rochester restaurant and prepared for the next day’s out-patient ablation procedure. Things were going smoothly.

The next day, Alex went to St Mary’s Hospital which is part of the Mayo Clinic and was prepped for the procedure. We expected this to take several hours and since she was an older child, they took the younger kids first. So Alex’s procedure started around 10am. My wife waited patiently while the ablation took place. And she waited. And waited. They were apparently having trouble with the “mapping” process and the subsequent ablation as well.

My wife got multiple updates throughout the day but it was taking much longer than anticipated. It was a real shock when she was told that the ablation had caused Third Degree Heart Block. We quickly learned that in Alex’s case, this could be fatal. She was kept deeply sedated and they attached an external pacing device. My wife told me they had to keep her like this until the morning when they could have a surgery to implant a permanent pacemaker. This was NOT what we had in mind when my wife and daughter headed out on their trip to Minnesota.

Just another ablation!

I got the phone call in Indianapolis around 7 or 8pm. My wife was understandably upset because we had not intended for this to be the outcome. My wife has a medical background and is not easily flustered; but this time she was clearly upset and worried. We knew in the back of our minds that a pacemaker was a possibility at some point in time but we didn’t really think it would come to this right now. I remember the night clearly because I had just pulled a big T-Bone steak off the grill and had poured a glass of nice red wine…clearly my way of dealing with stress! Once I got the call, it took me a while to make arrangements for our two young sons to spend a few days with friends. Then around 8:30pm I got in the car, bought a large Diet Coke and headed to Rochester, MN – approximately 550 miles.

I drove and drove. Singing and opening the windows to stay awake. It is amazing how adrenaline can help you stay alert. Once I got near Rochester and turned onto highway 52 from I-90 I kept speeding up and speeding up just hoping a policeman didn’t pull me over. I had been on the cell phone and knew that Alex was heading into surgery just about the time I was scheduled to arrive. I drove faster. Even though she was deeply sedated I wanted to see her before surgery. Thankfully I knew the area from our previous trips to St Mary’s Hospital. I parked in the garage and literally ran up to her room to see her.

After driving all that way, I had missed seeing my daughter by mere minutes. I simply couldn’t believe it. What a letdown. I held my wife as we both cried. My wife had been through a lot the past few days dealing with all of these new developments on her own. She had been strong for our daughter. Now it was time for us to breathe and pray for our daughter who had already been through so much in her life.

The pacemaker surgery didn’t go as planned …but that’s another entry for another day. Stay Tuned.

Yes, our daughter (Alex) was born almost 19 years ago. We have fought daily for her. We have gotten to know various families over the years whose children have CHD.

A little more than 3 years go w met Andy and Jennifer. Some mutual friends introduced us because their unborn daughter was diagnosed with HLHS and they thought we could provide some insight into what might be down the road. We told them what we could but no one can really prepare parents for what they are about to experience.

Their beautiful daughter, Hope, was born a little over 3 years ago with HLHS and other complications. She had a stroke at a young age which slowed her down. But she is now walking and has the best smile in the world. Usually a very happy litle girl. She doesn’t talk yet but she can light up a room. Our families have become very close and we seem them multiple times a week.

Little Hope has had the Norwood – Glenn – Fontan already.

This week Hope went in for a motility test due to her feeding troubles. During the test something went wrong and the next thing you know Hope was intubated and in PICU. We visited Thursday (1/28) and things were getting worse quickly. She was on 100% Oxygen and her sats were in the 60s. Echo, X-Ray, talk of ECMO (which she has been on before), etc. Thankfully she turned a corner and stabilized. Sats climbed back into the 80s.

So, as friends, we wait. We wait for the next text message, phone call, CaringBridge update. We will go back to the hospital today to be supportive.

What’s the point of this Blog entry?

18+ years after my family went through all of this children are STILL being born with the exact same issues year-after-year. It is frustrating. Yes, medical advances have been made with some surgeries, etc. But nothing that dramatic has changed in all of those years.

I am so pleased to see so many families out there on Twitter, Facebook, etc…trying and wanting to make a difference.

Please keep up the good work and we can make a difference. It is going to take time and we can’t give up just because we have been battling this for 18 years or more. This is our life and we will continue to fight for our kids. Keep telling your stories for awareness. Keep helping families who are new to CHD. You ARE making a difference one day and one life at a time. 

CHD Continues – with Hope!

On February 14, 1991 our unborn daughter was diagnosed with serious congenital heart defects. Specifically: Single Ventricle, Pulmonary Stenosis, and Transposition of the Great Vessels. This was our first child and, yes, it was like hitting a brick wall. We had done everything “right” in terms of planning the pregnancy and my wife took excellent care of herself. This was merely a Congenital Heart Defect.
Back in those days we didn’t have internet access so we went to the medical library to begin researching our child’s diagnosis. These highly technical manuals did not paint a very pretty picture for the future. We told our families and friends and everyone prayed.
On April 30, 1991 our daughter, Alexandra, was born. My wife was able to spend about 30 seconds with Alex before she was whisked away to nearby Riley Hospital for Children in Indianapolis. I left my wife and went with the baby. To this day I can’t imagine my wife being in that room alone having just given birth and having no idea what was going on with our new daughter.
The initial diagnosis was confirmed but they said Alex looked pretty good, all things considered. After a week in NICU they basically told us to come back when she started turning blue. So, at 3 months of age we were back in the hospital for a Blalock-Taussig shunt. This surgery worked well and helped her with oxygen flow until she was 3 years old and needed a Fontan procedure. Again, Alex came through with flying colors. It’s easy to forget the weeks in the hospital, trying to make a 3-year-old walk with drainage tubes and the many unknowns.
We sailed along for 10 years just taking the regular medications before that CHD monster reared its ugly head again. We knew it was lurking around the corner and would visit again. We just weren’t sure when. From age 13 to 18, Alex had 8 more cardiac surgical procedures and untold numbers of overnight hospitalizations. These surgeries included multiple ablations which led to third-degree heart block. Which led to a dual-chamber pacemaker.
Alex is now a freshman in college studying Spanish and International and Global Studies. She has been on multiple mission trips to Mexico and Honduras. One of the Mexico trips came days after a pacemaker surgery. Our family lived in a very remote area of Honduras for 7 weeks in 2008 serving in an orphanage. We want Alex to lead as normal a life as possible even with her limitations.
I realize that each CHD kid is different. Some are more severe than others. We have good friends who are also CHD families who have worse situations than we do and they can’t imagine a day when their child will be able to do what our daughter does. They look to us and pray their daughter sees her high school graduation.
But one thing is for sure. Each of these children just wants to grow up and do “normal” things. Ride a trike. Jump Rope. Climb a tree. Swim. Ice Skate. Fish. Play soccer. Camp. Play in the band. Travel. Go to Prom. Go to college. Get married. Have a family. Live. Laugh. Love.
We have never…and I mean never…asked “why me?” It seems like such a futile exercise. A waste of time and energy. We should put our energy into funding research into CHD. We should put our energy into helping other families who are coming up behind us. We should put our energy into living and showing our children how to live and appreciate everything that we have. We are so blessed to live in the USA where we can get quality medical treatment.
In our family, a life of children and heart disease is all we have ever known since Alex was our first child. Her two younger brothers have no CHD and they also know that Alex gets hospitalized a lot and that is just the reality of our family. We look for every opportunity to laugh and love. We don’t hold Alex back. She knows her limits.
We have no idea what the future holds for Alex. Anything could happen at any time. She will never be “fixed.” Seize the day. Make a difference in the lives of those around you and those you don’t even know. We have volunteered for many charities since before Alex was born. We have raised lots of money for heart causes. After 26 years in business I have decided to make this passion my life’s work. I recently became the Director of Development for the International Children’s Heart Foundation. It doesn’t even seem like work to me. This is my life and I don’t ask “why?”.