Our Letters of Hope

I am writing to ask for help in spreading awareness of Congenital Heart Disease (CHD). This is the most common birth defect in America and there is a large need for research in this area. One in 100 children will be born with some type of heart defect. I am amazed that medicine has come as far as it has in the past few decades. Because doctors are continuously learning about these heart conditions, many lives have already been saved; lives that would not have existed without this research. I am blessed to say that our daughter, Mycajah Reese, is one of those lives.

I remember so vividly the day she was diagnosed. I went in for a level 2 ultrasound at 18 weeks in my pregnancy. We were ecstatic to find out we were having a little girl! We were told that everything looked fine, but the doctor could not get a clear view of her heart so I should come back in a few weeks. At 21 weeks gestation, I went back for another ultrasound while my husband stayed home with our other children. As I lay there very confident everything would be great news, I was told otherwise. Our daughter had major complications with her heart. As it is common to have other defects with heart issues, the doctor proceeded to measure other body parts to be sure she was growing on track. What he found next was amazing. He continued to tell me that her heart and stomach were located on the right side of her body versus the left. When I asked, in complete shock, if she could live like that, the response I got was, "It can be compatible with life, but it also might not be." How does one react to this news?! Further yet, how was I supposed to call my husband and tell him the news, that there is a possibility our little girl will not make it to birth? And if she does, it is only a matter of hours before she dies.

The next step for us was to meet with a pediatric cardiologist, though the news looked very grim. I was very anxious going into this appointment since we were told to expect the worst. However, it was a very different scenario, and our cardiologist offered us hope! She could "fix" our baby.

Mycajah is now eleven months old and was prenatally diagnosed with Hypoplastic Right Heart Syndrome - she is missing her right ventricle. She was also diagnosed with Situs Inversus, where her organs are a mirror image of ours. However, because of the research and experience in treating CHD so far, our daughter is thriving and with us today! We cannot thank God enough for this, for we know His hand is in medicine and we believe that doctors would not have the power do what they can without God's will.

More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime; and we were told that Mycajah would need three surgeries. She started heart failure at only one week old, but thanks to the wonderful doctors, continued monitoring, and good strength from our little fighter, Mycajah was able to skip the first surgery. She had her first open heart procedure (called the Glenn) at four months old. Nothing can prepare you for this moment. It was so surreal, and though we were told surgery would be the only means of saving our daughter's life even before birth, we were not ready for it. However, her surgeon was phenomenal and she came through like a champ! It was a long recovery afterward. One week in the hospital turned into two, but she is reaching major milestones now. She will need one more open heart procedure (the Fontan) when she is 2 or 3 years old. We are not looking forward to going through surgery again, but it's her only chance for survival. Had it not been for the advancements in treating these defects, we would have already lost her.

Many factors played into saving Mycajah's life. First, her oldest brother, Christian is 4 years old and has Down syndrome. We knew prenatally that he would have Trisomy 21 (Down syndrome). We loved him all the way through and were so excited to meet this amazing little boy who is so full of life and love. Because of him, the doctors order level 2 detailed ultrasounds for all of our children. Ethan, who was 2 years old on Christmas Day, was born without any defects or special needs. For Mycajah, however, the ultrasound was only the beginning of a very long journey.

Mycajah goes to the Children's Hospital of Wisconsin, Milwaukee (CHOW) and her cardiology team and surgeons are excellent! They answer all of our questions and have been our support and friends through these tough times. Though I don't like the reason we have to go Children's, I love that we get to see our friends and team on occasion.

Secondly, we recently attended a heart education day and learned that CHOW pioneered a home monitoring program for children who have Hypoplastic conditions between their first and second surgeries. Statistics show that this system significantly increases percentages of children being saved during this stage, greatly decreasing the loss of life at such young ages. Today, hospitals nationwide are developing programs based on CHOW's successful model.

Finally, as Mycajah's family, we have educated ourselves and are continuously learning how we can help her to thrive and grow into a strong and healthy adult. We ask questions and serve strongly as her advocates.

Much work still needs to be done to save the lives of children born with CHDs. There are more than 40 different types of congenital heart defects, and little is known about the cause of most of them. We had genetic testing done after Mycajah was born, and the doctors could not pinpoint the reason for her condition, one that is literally one in 1,000,000.

I am most familiar with Hypoplastic Right Heart Syndrome because of our first hand experience with the defect. It is my understanding that that 90% of children with Hypoplastic Heart syndrome will live into their 20's; of those, 70% will make it to their 30's. While the survival rate has improved significantly in the past 20 years, there is still a significant percentage of children who don't make it. One example is the unfortunate loss of Sophia Gokey, who passed away at CHOW just 2 days after Mycajah's birth. Though devastated, we are also grateful to the wonderful and sacrificing parents and children who came before us, many of whom have lost the battle with life. Because of these unselfish people, our daughter is able to live a fuller life; but knowing our beautiful little girl could be one of these statistics is terrifying.

As a family, we try to participate in as many research projects and questionnaires as possible in hopes that it will help future generations. Our goal is to do whatever we can to help save a life through our experience with our daughter. There are so many unanswered questions as to what these children are ultimately capable of, and how doctors might be able to repair their little hearts and give them a normal life. The fact that we get to enjoy her right now, take it one day at a time, pray that she has a chance at a normal life, love her deeply, and enjoy her beautiful smile, laugh and goofy personality, is enough for me to advocate for our little girl and so many like her. Mycajah is truly a gift from God! She has been the driving force in our becoming advocates for children born with CHD; and learning more about what research can be done and how to get the funds to continue this wonderful research.

Unfortunately, there is not much awareness of the frequency and severity of these defects; and I believe awareness would help increase donations toward research. (I recently learned that of every dollar the government spends on medical funding; only a fraction of a penny is directed toward congenital heart disease research.)

Oprah, you are respected and admired! People listen to you! I am asking if you would consider promoting this cause. The thought in the back of my mind that I encounter daily is that without continued research and with financial limitations to continue such great awareness and research, many lives may still continue to be lost at such young ages. Thank you for taking the time to read my letter.

Sincerely,

Tammie Emery