A Letter to Tina, a Mother Expecting a Baby with HLHS
January, 2001

My! You asked a lot of questions! And if I'm not mistaken, you could have asked a million more. I think I'll refer to your letter and answer things one at a time.

You asked:
How do you get through this? From what I've read and heard, there are so many things that can go wrong, so many ups and downs, I know we have a long road ahead of us, any information you think would be helpful to us, we would greatly appreciate.

How do you get through this? I may not be the best person to answer this because it is something I wondered myself. If you go to my website, you can find an essay from the first chapter of The Heart of a Mother online. An essay by a mother who found out in utero, like you, can probably better answer that question than anything I could say.

One thing I can say, though, from having met hundreds of parents of children (or grandchildren) with congenital heart defects (CHDs) is that prayer plays a significant role in many people's lives. After I found out about Alex's condition, I found prayer especially helpful. It was also very important to me to contact other parents and find out how their children were doing (like you are doing now :-) and to keep in touch on a regular basis with them. I wanted HOPE. I needed hope. I needed to know Alex wasn't the only child dealing with this. Mind you, I found out in the days before the Internet was a household word. Most of my communication was via telephone and handwritten letters.

You asked:
How old is Alex now? Does he remember the surgeries? How are his scars? Does he lead a "normal" life? What restrictions does he have? What medication is he on?

Alex is now 6 years old. His surgeries were conducted when he was a baby so he has no recollection of them. His scars are beautiful. :-) He leads a very active life. He has karate twice a week, art once a week, volunteers at the library once a week and otherwise lives a very full and happy life. I homeschool both of the boys and Alex is on or above grade level in all subjects. He is especially creative in writing and drawing (hence the art lessons). His only restrictions are self-imposed at this time. That's how his cardiologist likes it with children this young. Alex just had his first Holter monitor last month and he did very well. Right now there are no additional concerns. He is on one baby aspirin a day and digoxin.

You asked:
We also have a healthy 14 month old boy Jordan, I read in your book you too have a older son, (Joseph), how does he handle Alex's condition? Is it hard on him?

I'm glad you asked this. I am so very proud of Joey. In fact, my second book is dedicated to Joey (My Brother Needs an Operation), but I'm sure that more books will be written about Joey in the future. Just the other day, Joey and I were washing dishes and he said to me, "Mom, you would never know by looking at Alex that he's had open-heart surgery. He is doing so good." I was impressed that he had even thought to say that -- but a little surprised because that is often what I hear parents of children with HLHS say.

Since you asked about Joey, I'll share another little story that I have been wanting to write down, but hadn't had the chance to yet . . .

Alex has had a lot of medical work-ups lately because we just recently moved back to Texas and his cardiologist wanted new baseline data. This meant a chest x-ray, an EKG, a Holter monitor (the first one ever for Alex), a regular physical exam, and lastly an echocardiogram (echo). Not to mention his flu shot in November!

Because I homeschool the boys, Joey is always around when Alex has a doctor's appointment. Occasionally I will have a friend take care of Joey, but usually I prefer for Joey to be with me. Joey is usually wonderful and actually helps jolly Alex out of being afraid or sad. He's always quick with a joke or a funny face just when Alex most needs it.

It's been quite a while since Joey sat in on an echo because when we lived in Florida, the cardiologist was 2 hours away and I let Joey stay with a friend when Alex had his visits. Joey didn't remember the last echo Alex had had. He brought a book, but I knew that that wouldn't hold his interest very long once he saw the machinery being used on Alex.

I've always felt it was important to be honest with the boys. When they ask questions I always try to give the best answer I can in words they'll understand. If I don't know the answer, I usually ask someone to explain the answer to the boys. So when the echo tech started prepping Alex for the echo, Joey (and Alex) began asking quite a few questions. The tech was pretty good at answering the technical questions (what's this button for? what does that mean? is that like a computer keyboard?), but he didn't have an especially warm demeanor. The cardiologist came in to do most of the echo, but by that time, Alex was pretty scared.

I am afraid this echo tech was more accustomed to adults with acquired heart disease. Our local hospital doesn't treat children with severe CHDs; they are referred to hospitals in other cities like Dallas, Austin, Houston or San Antonio. To be fair, I think the echo tech was a little taken aback at the complexity of Alex's heart. Because of that he didn't talk to Alex and was extremely quiet (after answering the boys' initial questions, of course).

Thank goodness my husband and I were with Alex. Frank got up on the bed with Alex and held his hand. He kept telling Alex it would be okay and tried to explain what was going on. When the cardiologist came in, he asked Alex what he got for Christmas and teased him a little. Alex loosened up a bit, but he still clung to Frank's hand pretty hard. Joey stood by my side and watched everything that was done or said.

After 45 minutes, Frank had to go to work (he's a nurse at that hospital -- which worked out nicely!). Without hesitation Joey jumped on the table and told Alex that he could hold his hand. For the next 15-20 minutes, Joey stayed by Alex's side and mimicked Frank's soothing words, phrases and hand-holding. As soon as the echo tech cleaned Alex up, Alex looked at Joey and said, "Thanks for holding my hand, Joey." I almost cried.

Joey is the best big brother I know. His kindness and his sense of humor make him the perfect brother for Alex. I couldn't have picked a better brother for either of my boys. I am sure that Alex's heart defect has affected Joey, but I believe it has been in a very positive way. I think Joey is much more compassionate and caring than he might have been otherwise, and he was already a wonderful little boy.

Perhaps the best thing about Joey, though, is not his kindness or the love he shows for his brother. That is wonderful, don't get me wrong, but I think the best thing about Joey is that he is the Normalizer in the house. He won't let me baby Alex too much. He doesn't dote on him. He's quick to wrestle with him, chase him around the house and challenge him in ways that are very good for him. Thanks to Joey, Alex is leading as normal a life as possible.

You wrote:
I still don't understand why this is happening to us, I know the Doctors say it is a "Fluke of nature", but, that just dosen't help. I keep thinking what did I do different that I didn't do with my first pregnancy? But, I have no answers, I've done everything the same, I guess I just want something to blame it on.

I have no answer for this either. I believe that both of my boys are gifts from God. I don't know why I was so blessed to be given both Alex and Joey, but I am thankful I have them. I believe that God gave me Alex and a special mission -- to help others concerned about congenital heart defects. Writing books, getting to know others in the CHD community, praying for others, writing letters of support and encouragement, giving speeches and through my website I can reach out to others and try to touch someone in a positive way. Alex has opened up my world to include people I never would have known otherwise. Because of my concerns about how Alex's heart defect would affect Joey, I have learned more about sibling issues and am trying to help families in that vein, too. I learn from my children everyday and feel the presence of God all around me.

May you also feel God's blessings in the months to come. I hope you'll keep in touch with me and let me know how things go. I will be praying for you and your family.

Sincerely,
Anna Jaworski
Baby Hearts Press

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