Dear parents of a child with a heart defect,

Being a parent of a child with a heart defect is a very difficult, emotionally trying, and also an extraordinarily, beautiful experience. My son was born with hypoplastic left heart syndrome. This means he has half a heart. He was diagnosed at 18 weeks gestation during what we thought was a routine ultrasound that would let us know that he was in fact a baby boy! The excitement of this knowledge lasted only a short time. The next morning I received a call from a nurse, not a doctor, and was told that something was wrong with my son's heart. On that day, I had been at work. I went into a private office and began hyperventilating. I called my husband and he told me to come home to talk. I could not even form the words to explain what I had been told. I felt that I should have been called into the office, the doctor should have sat me down, and explained compassionately what the situation was. I drove home with tears flowing more than they ever have in my entire life, almost wrecking my car. I made it to my husband and told him what I knew. Devastation set in and lingered above our hope for the duration of the pregnancy.

We were then referred to and accepted as patients at Children's National Medical Center, and they took me in to their clinic in less than 12 hours upon my first call. Mary Donofrio, MD, and Craig Sable, MD, my son's cardiologists, were already on the phone with me, emailing me, and calming me down within minutes of my first call to reach out to them. They made this new world that was so unfamiliar and frightening seem a little less scary by the simple fact that they had even heard of my son's heart defect. This heart defect is rare and going to a place where they deal with it on a daily basis brought us back down to Earth, to safety, to what would soon become all too familiar. Their compassion and understanding are what made us choose Children's National as our hospital of choice. We interviewed several other cardiologists and even went to a children's hospital in  Philadelphia. But our hearts were set on the team at Children's National– they made us feel safe, and they also told it to us straight, explaining as simply as possible what had happened to our son's heart, and telling us that the future would hold within it three serious open heart surgeries that would reconstruct my unborn baby's little heart.

Abortion was suggested as an option; this was not a consideration of ours. My son, Jack, began to kick at 14 weeks. He was alive, he was a person, and he needed us. As the months progressed, I decided to try to be as normal as possible, after all, when my son was older, I wouldn't want him to look back and ask why we did not have a baby shower for him, or why mommy looked so sad in all of the pictures when she was pregnant. I chose to believe in God's role in our lives and to be eternally hopeful for the best. I was strong; I was prepared – or so I thought.

After my planned Caesarean section (C-section) I left the hospital within 12 hours so that I could see my baby before his first open heart surgery. I held him that night, while he was hooked up to many monitors and wires, and he grabbed my finger and held on. It felt so strange, like I didn't know him at all, and at the same time, I felt I had known him my whole life; he was supposed to be here, and he was here for a reason. I did not really get to see him at all after his birth. He was taken from me immediately and set up with prostaglandin and had his first out-of-the-womb echocardiogram. He was baptized in front of our whole family as well as the transport team from Children's National, and then he was carted off in what looked like a bullet sized baby space ship.

I recall the first time I saw him after his surgery. I raced into his room to see him, but he was just coming back from surgery. My husband stood there with his camera around his neck and a stuffed koala bear ready to give his son. Our baby was being wheeled in, and I saw it all, before I was ready – the open chest, the blood, the tiny heart actually beating before my eyes. They had to leave his chest open to get rid of some of the swelling. He was intubated and hooked up to so many IV medications and tubes and wires. I fell backward in weakness and fear. Thankfully, a friend of mine who works there caught me and held me up. This type of nursing staff and compassionate care is what Children's is known for. They are not just doctors or nurses, they get to know your child and they care about him or her. What I remember thinking most often is that this was somehow a mistake. Jack looked perfect the night before, how could this have all been necessary? I felt myself feeling like we were the victims of some horrible research study, and wanting to believe that my son really was fine after all. You go through so many emotions during this time, none of it makes sense because what you are dealing with is not in fact anything that should be expected of any parent to face.

What I think of most are the times in which I had to, and will have to, hand my child over to the medical team. I had to literally pull him out of my safe arms and hand him over to men and women in white coats, knowing that he could either live or die, within the next few hours. Statistics don't mean much to me when there are high chances of survival. I suppose it is comforting, but the fact of the matter is, in each and every instance where I had to hand my son over, I knew in my heart that his chances of survival were 50/50. I say that because I have seen so many children and babies around me die - they fall like tiny, helpless soldiers, all around me, in all places around this world. I know how precious his little life is and I know how fast it could be taken from me.

During the waiting time while he is in surgery, a mom does not want to imagine you cutting her son open; does not imagine the saw that must cut his sternum in half; does not think about the blood in his tiny, motionless body. I think about hope, and love, and God's role in our lives. Handing him over to that team, knowing that they do this every single day, gives me some peace. Though my world has been flipped upside down during and leading up to the surgery, I know they are comfortable with what they are doing - this life saving miracle surgery - is a commonplace procedure to them. I wonder, after they are done and my son comes off bypass, if they rejoice when his tiny heart starts to beat again on its own. Do they know how funny he is, or how much he likes to laugh? Do they know what new words he has learned this week, or how much he likes to hug me and his daddy? Do they know what he means to me? Or how my world would end if he were not in it?

My heart baby is the center of my existence - if he were not, he probably would not be alive. Heart moms, as we call ourselves, must be different than other moms - hypervigilance takes on a whole new meaning. We must follow our instincts; we must always be on our toes. We must have a "go bag," full of his and my overnight clothes, extra medicines, diapers, etc. in case we need to make a trip to the Emergency Department (ED). We must wash our child's hands each time he or she touches someone or something. We must live each day knowing that the next surgery is looming in the back of our minds. And sometimes, even if we are the best, most prepared parent possible, it is still not good enough. I live with a constant feeling that I could do more, try harder, make him better.

There is also the constant worry – "what did I do to cause this?" There are plenty of ads on TV that suggest that heart defects are caused from the use of anti-depressants during pregnancy. The ads infuriate me, personally, because generally, people hear of hypoplastic left heart syndrome when they hear about my son, and then again when they see these ads on TV. They almost always make a connection, and assume that I took one of these medicines while I was pregnant. Well, guess what? I didn't. I did everything right. I wanted my baby more than anyone ever wanted a baby, and he still was born with half a heart. I don't know what I did to cause this, or why a tiny, innocent infant has to endure so much pain and suffering just to go out in the world and get a chance to be like everyone else.

My husband and I have suffered through the constant, inevitable fact that those around us may not be able to truly understand what we have been through and what our lives are like now. We have lost friends, or at least lost the closeness and the connections we once shared with some friends because, to be honest, the lack of compassion, understanding and the overabundance of comments like, "so, his heart is fine now?" literally drive us insane. We are patient; we understand that the majority of those we know will never have to understand this way of life in which a baby or child you know could be playing with your son one day, and be gone the next. The world is different to us now. We know what is important; we value every day; we become wrapped up in our son’s every move, every laugh, every hug, and smile. We hope and pray that we will be able to see him grow up. An experience like this not only changes the present and future, but it causes you to look back on everything in your life in a different light. You think about the sports you played as a kid, and you know your son probably won't get to play them. You think about all of the things you did as a child, how easy it was and fun it was, and you know that your son will have a lifetime of hardships that include surgeries, catheterizations, blood draws, echos, and doctor visits. You wish more than anything that you could be the one under the knife in his place, but you know, sadly, that is not possible.

Sometimes my husband and I feel like the world is a cold place. We feel alone and often misunderstood. We have gotten a thicker skin, and we expect nothing from anyone anymore, aside from each other and our families. And then, as quickly as we were offended or slighted or our son's heart condition was minimized, there is some rare understanding individual who truly, utterly cares… who is touched and changed by the simple fact that my son is alive and happy. Those are the people who stick in my mind. I am so grateful for the kind people who have crossed our path through the heart community and beyond, the boss that just "gets it," and looks in your eyes and just knows you have been through hell and back; the friend that makes one single statement that lets you know that they understand that you feel like your heart has been pulled out and hung in front of you; the stranger that heard about your story, and contacted you to let you know they would pray for your son. Those are the people that I will remember in my life.

And what about our marriage? How have we made it through this situation and stayed together? I recall times we actually had arguments on how blue our son's feet were… blue enough to take him to the hospital, or an overreaction on my part? To be honest, I equate this situation to war. We have essentially endured similar life circumstances to the men and women who go off to fight in other lands for what they believe in. Our battle ground, too, was once new, frightening, and unfamiliar. Our IEDs are the emotional bombs that explode every time there is a trip to the ED, every time we learn that his aorta has again narrowed, every time we hand him over to have a life saving surgery. We are fighting a different battle, and the overall goal is to be absolutely certain that it is not against each other, but instead a unified front built up against a common enemy – congenital heart defects. We, too, fight to keep someone alive. We, too, see fallen soldiers every day as we learn of little Olivia's death at 4-months-old, Parker at 13-days-old, or little David who never even made it home once. We also experience post traumatic stress disorder (PTSD). I have actually seen my son's heart stop; seen him code, have CPR and epinephrine, and be shocked back into the world. How could we endure these things and then come home normal? We will never be normal again; we have a new normal now.

My life is wonderful. Though we have had struggles in our marriage, at this point in time I can honestly say that every day, I love my husband just a little bit more. There is no way we could go through this together and not become stronger as a couple. We are Mama and Dada now, not Pat and Katie. Our son's laughter and comical personality washes away all of the bad feelings and sad memories. He is absolutely the happiest, most carefree little person I know. He has taught us so much, but most of all he has taught us how to really truly love.

Thank you if you have gotten this far along. Thank you for being a friend to us; thank you to our supportive, loving families who have been our strength through the worst times. Our son is a miracle, and his life is a gift that we get to open each and every day that he wakes up and calls for us.

Sincerely, 

Jack's mommy, Katie

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Cardiovascular (heart) conditions and diseases - Letters