I hope it can be helpful to any child, or parent that has a child with a life long illness. Because I know it helped me a lot just to write it.

The following story was written by Deborah Dupere in 1998.

I was born in Massachusetts in the early 1970’s. I also had a twin sister, her name was Deanna. But she died after only 11 days of our birth. Her problems were a little more complicating then mine. So I never got to meet her, which means I am unable to tell you about her. She was so sick that my mom only got to see her once for about five minutes. Now about my life.

A few days after I was born, doctors told my parents that I had a heart disease called tricuspid atresia. Which means my heart never fully developed so I don’t have good blood flow through my arteries and lungs. I also only have one working lung.

At 2 months old I had my first surgery and they put in a Cooly Waterston shunt to help the lung that didn’t work, work. This helped for a while. Then at three years old they tried to do a Bypass but it was unable to be done. At the age of 12, I had a valve replacement. This was to help my blood flow through my heart and lungs. In the 1990’s, I developed a new problem with my heart. I started to have abnormal heart rhythm with a very fast beat. Doctors tried to control this with medication several different kinds, which none worked. It got to the point that the only way to fix my heart rhythm was by electric shock straight to the heart with paddles. Another word for it is [cardioversion]. Which after so many of these it wasn’t healthy anymore, so the only thing left to do was have a pacemaker put in, as to keep my heart at a normal rate. But they were unable to get me back to a normal sinus rhythm, so my heart rhythm always looks like I am in flutter. It is now paced at a normal rate so I don’t feel anything bad any more. There was only one drawback to that surgery, it was that when hooking up the pacemaker wires to my heart, they accidentally punctured a small hole in my heart. But it wasn’t at all the surgeon’s fault. It happened because the muscles in my heart were weakened from having so many cardioversions. They repaired the hole with scar tissue from the upper part of my leg, so besides waiting for the pacemaker site to heal, I had staples in my leg and was bed ridden for almost two weeks. After my long recovery, I did very good and continue to do so as far as that problem goes.

But now going back to the valve I had put in, when I was a kid. This means the valve is 10+ years old…and I have grown a lot since then, but the valve can’t grow with me so now it is too small for my body and won’t work right any more. So this brings us to where I am now in 1998. And I am back at the hospital waiting to have a bigger valve put in with the hope that it will keep me stable until I am able to go on a heart lung transplant list. But the soonest they can do the valve surgery is June of this year.

Well the only thing else I can tell those that read my story is that I have found the best way to deal with everything is have a positive attitude no matter what happens or what has happened. Also having a great family.

In my family I have a wonderful mom who was always there. I can’t tell you how many days and nights she spent by my bedside in and out of the hospital. My father was and still is really great also. In fact now that I’m older, I can say that in his own loving way he spoiled me and he, too, maybe not always at my bedside, but he was there when I needed him, sick or not. All I had to do was say one word “DAD” and he was there, no matter what time or how the weather was.

Also I have two really great older brothers. When I was a baby, they too were kind of young, but they tried to help out in my care, with as much as they were able to handle, the older they got the more they wanted to help. I think their favorite thing to do with me was to take me outside to play because that’s the only way I could go out was if they were watching me. Now they are grown up married with families of their own, but still they are always there for me and so are their wives, especially just when I need to talk. I must say their wives have helped in my care as much as they could since the first day they became a part of the family…But the person who has been my main support for 6 years and has always been by my side. I know that no matter what he always will be by my side, even though we will most likely never get married. Only because of medical coverage for me. But that doesn’t matter to either one of us as long as we’re together forever. This person’s name is Craig.

I feel the most important part of someone with an illness is the type of care from their doctors. Now in my years of being sick, I have had a few different heart doctors but I think the one who managed my care and provided me with the most help is the doctor I started to see in the 1980’s. His name is Dr. Gerald Marx. At that time he worked at New England Medical Center, Boston, MA. But now just since January of this year he moved to Boston Children’s Hospital. He is such a great doctor and all around person that I switched hospitals too, all because of him.

Because I love and respect him as a doctor, I think we have a special bond that you don’t see often between a patient and a doctor.

So I could not even imagine someone else taking over my care, the same goes for his colleagues that also help him with my care: Dr. Geggel, Dr. Folton, and Dr. Baruel.

Later…

Mid May 1998: Well, today I’m leaving the hospital. But they still haven’t done my valve surgery. It has been scheduled for June. During surgery they will replace mine with a bigger one and replace my pacemaker box so they can add a second lead. This will help the pacemaker to control the upper part of my heart as well as the lower.

June 7, 1998: I’m going back to the hospital for my surgery. Once I’m there, they will start an intravenous line to start my blood thinning medication {Heparin}. They will bring this med to level just right so that during surgery I won’t bleed too much or so my blood wont clot too much.

June 9, 1998: Day of surgery, my mom and boyfriend are here. I’m waiting for my Dad and two brothers to arrive, to see me before I go to surgery. I’m going down at 7:30am, it’s now 6:30am Dad and two brothers have just arrived. Now the nurses will prepare me for the Anesthesia doctors to come to take me down stairs to the operating room. The doctors are here my family will go down with me to the waiting room outside of the O.R. Now I’m in the operating room they will now put some medication through my IV to make me very sleepy.

June 11, 1998: Surgery is all done. I’m just starting to waken, I slept almost a day and a half. My mom says everything went well. But I’m hooked up to all kinds of machines and have tubes coming from everywhere. I keep trying to talk but no one can understand me. So I’m getting mad and mom and Craig are laughing at me, so I get even more mad. But they only laugh because they can’t understand me. I even tried writing on Craig’s shirt, all this cause I wanted a drink but couldn’t have one. They may have laughed but I knew they were there when I woke up, the others had already left because it was almost two days later. They stayed until I got to my room in the ICU.

June 13, 1998: I have my chest tubes out. Mom is going home for the night, but Craig is here. I didn’t have a goodnight last night. Because they held my pain medication from 10:30pm to 9:00am the next morning. So right now I’m just about crying with pain. The new nurse Michelle is getting me some pain medication.

Now Sunday afternoon my pain is much better. Mom is back and more family is on their way up to see me. Craig will be leaving at 5:00pm, to go home. Mom will be here with me. Doctors say if I keep doing well, I might go home the end of the week or early next week.

Today is June 18, I’m going home, doctors say I look great and I’m doing good. My next checkup is July, with Doctor Marx.

Now June 23 I’m at home, but things aren’t doing well. I look good but I’m in a lot of pain. And my lungs are all congested because I’m unable to cough.

The time is 7:30 still June 23. Craig and mom are taking me to the ER, at Boston children’s hospital. Orders from Dr. Marx, most likely I will be admitted, for a day or two.

The next day I was admitted. It looks like I have a small infection in my lungs. But should be fine in a few days and back home, 5 days later June 28. My lungs are better, I can cough better without much pain. The infection is clearing nicely, and Doctor Marx says I may go home today. It’s been 2 weeks sense I came home on June 28. But almost 5 weeks since surgery, and Doctor Marx is so amazed with how great I’m doing. Even my labs that he checks all the time are the best he’s ever seen them. And most of all I feel great too.

But I would also like those that read this to know, that through the years of growing up when I got sick I didn’t always have to go to the Boston hospital, so I had plenty of admissions to St. Anne’s hospital, in Fall River. All the nurses are really great, some have known me longer than others but I still could never pick a favorite. Because I love them all the same, it’s like having another family. These nurses all work on the peditric floor, some of them have left and went to another unit, or moved onto another hospital. I only hope the ones that have left get a chance to read this. So that they can see that I haven’t forgotten how nice they were to me, and how much it meant to have them all a part of my growing up and getting were I’m today.

I still will never forget the time all the nurses took up a money collection so that my boyfriend and I could buy tickets to his high school prom. They even collected enough money to pay for his tux rental.

This is something we’ll never forget, THANK YOU FOR EVERYTHING, LOVE DEBBIE and CRAIG.

Now as for all the local Doctors that took care of me. Well I can’t say enough about them either. There was Dr. Delany, he was the first to take care of me, when I was first born. In fact he’s the one that had me sent right up to Boston hospital {NEMC} he handled my care for about 16 more yrs. Then came Dr. Jean Limert, she took over my care for about 4 or 5 yrs. The most I can say is they too all took great care of me and they always made sure that they kept in close contact with the Doctors in Boston. The Doctor that takes care of me now locally is Dr. Gabry, and some of his fellows and they to for the most part keep in close contact with the Boston doctors. But I don’t see Dr. Gabry too often because with all that’s been going on, usually my boyfriend has to drive me straight up to Boston. But Dr. Gabry’s office is still there whenever I need them. Well this is the end of my story. I hope it can be helpful to any child, or parent that has a child with a life long illness. Because I know it helped me a lot just to write it.