Thursday, August 10, 2006

Whyte family heart story submitted by heart mom Julie Whyte.

When Jack and I went through four years of trying to conceive a child, we thought we knew what “tough going” was. Then as we endured the experience of fertility testing, we again thought we knew what “tough going” was. Upon making the decision that we would not pursue any further measures, we discovered that we were pregnant. Our first daughter came along with little more than your average course of a pregnancy, with the exception of Gestational Diabetes, maintained by proper diet. Two years later during our second pregnancy we were ordered to have a Level II ultrasound due to a test result indicating that our baby girl could possibly have Downs Syndrome. The final conclusion…unsure. We opted to not have an Amniocentesis run when we were told there were no physical anomalies to be concerned about and that we had the option to just see if she had Downs Syndrome when we gave birth. When daughter number two entered the world, I (mommy) was so thrilled that it wasn’t until 40 minutes later, when my husband leaned over and whispered to me, “She doesn’t have Downs” that I realized that my love for her truly was unconditional. I hadn’t even thought to ask….I just knew she was healthy and alive and that was enough.

Skip ahead a few more years. My husband Jack and I decided that there was one more member destined to join our family, so we conceived another. Two short weeks later we discovered that we had lost the baby and we were shattered. We were told that these things just happen and we needed to move on. Now we REALLY thought we knew what “tough going” was. We couldn’t imagine anything more devastating. We actually considered the option of giving up our hopes for one more baby to complete our family. However, with a conviction in our hearts that God really meant for us to have one more, we conceived again.

An initial ultrasound was performed to be sure it was a healthy, viable pregnancy. It was. We were thrilled to be on our way and willingly made the appointment for a Level II ultrasound. Who would have known that at 18 weeks conception our world would be rocked to the core? The ultrasound started out routinely, but as time went on and the doctor seemed to be taking a long time to look at red and blue images of blood flow in our baby’s heart, we started to feel alarmed. The rest was a tear-filled blur as the doctor informed us that she was pretty sure that our baby girl had a heart defect called Transposition of the Great Arteries (TGA).

We had never known that according to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.) Sometimes the defect is so mild that there are no outward symptoms. Some heart defects are simply innocent murmurs which resolve on their own. In other cases, it's so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood. Severe heart defects often require multiple surgeries, a lifetime of medications and preventative measures to maintain a working heart and a healthy body. For some people, their only hope is a heart transplant.

As we were to learn as time went on, Transposition of the Great Arteries meant that her lung blood circulated in its own loop and her body blood did the same, thus leading to low or no oxygenation of the blood. TGA occurs in 5 to 7 percent of all congenital heart defects. Sixty to 70 percent of the infants born with the defect are boys. A fairly uncommon heart defect, especially in girls, but a somewhat “simple” surgery could repair it. Of course, this was only slightly reassuring but it was the best words of encouragement to could be offered to us by medical professionals.

As we let them perform an amniocentesis to test for other complications we clutched each other’s hands tightly. Fear and trepidation gripped us. If this were true, what were we going to do? We didn’t know ANYONE that this had ever happened to. What did it all mean? Would our baby be able to survive? What kind of life would she have? Where could we turn for help? As I said, this was a totally unexplored territory for us….as it is for just about any parent that is told their child has a life-threatening heart condition. The bottom line is that all you know is a love for this child that is so fierce that it hurts to think about what this means for THEM. It takes a while longer for you to wonder, or even care, what it means for YOU.

The next 21 weeks included routine check-ups, educating ourselves and our families on what our baby girl would experience, appointments with the University hospital to visit the PCTU (Pediatric Cardio Thoracic Unit) and NICU (Neo-natal Intensive Care Unit), countless ultrasounds to monitor the baby’s heart, a meeting with her future heart surgeon, a tour of Ronald McDonald House where we would have to set up a temporary home during her stay, monitoring Gestational Diabetes by blood glucose checks 3 times a day and a restricted diet to maintain sugar levels, and reassuring and preparing our two daughters for the very challenging situation of mom and dad being gone during their very first days of Kindergarten (for #1) and Preschool (for #2). Arrangements had to be made for every single day as our children stayed near home with extended family members and we lived 100 miles away with the baby. Not only were we told to expect close to two weeks’ stay after her Arterial Switch surgery, but we were strongly urged for me (the pregnant mommy) to live there for a few weeks before delivery so as to ensure a safe delivery (daughter #2 had been delivered in two hours flat) and immediate care for the little one. Imagine our surprise when I was ordered down to the University four weeks before the due date thanks to alarming evidence that I could launch into labor any minute. It was torture to face the reality that for the well-being of one of our children, we had to sacrifice the emotional stability that our other two children needed at this difficult time.

After a long, very prayer filled and emotionally charged three weeks, our baby decided to come into the world just 12 hours before a scheduled inducement. From the time we reached the hospital to the moment she was delivered was a whopping 48 minutes. We still are thankful that Ronald McDonald House was only a few blocks away from the hospital. This was exactly why we were requested to be there.

As Hurricane Katrina struck land in the Southern states, Rachel was born as naturally as any other baby albeit in a sterile operation room in case of an emergency C-Section. She was only slightly blue, so I was shocked and amazed that I actually got to touch her and see her for the most miraculous 30 seconds I could imagine. Some heart babies have to be whisked out immediately and that was what I had been prepared for. We were fortunate that six hours later we were allowed to visit her in the PCTU. We were even more fortunate that we were permitted to hold her in our arms. So many parents aren’t able to as their babies struggle for life from the very start. Rachel was doing quite well so her sisters visited her when she reached the age of 2 days. We wanted them to see her before the difficult leg of our journey began.

During the course of her first few days I overheard one of the doctors on morning rounds discussing Rachel with medical students. Because she was healthy, pink, and not laboring for breaths, he pointed out that she was the classic example of a baby that had early detection not taken place, could have been sent home from the hospital. She then would have become gravely ill, possibly not surviving. I counted my blessings for fetal ultrasounds again, as I had so many times before.

On the morning of Rachel’s third day in the world, we were at her bedside as early as possible. We held her for the hours leading up to her surgery, prayed, snapped pictures, video-taped and took hand and footprints with the nurse. Although we had faith in God and in the Doctors’ abilities, we feared that we might not see her alive again. We tried to make every sweet moment last. Several hours later, the transport team came to get her. We still choke up when we see the picture that was snapped as she entered the elevator. Now we KNEW what “tough going” was….or so we thought.

For three long hours we waited for news that the surgery was complete. We were updated once, but it was only to tell us that they had just opened and were getting her started on by-pass. The next update came when they were done. It could be several hours before we would be able to see her, but it was done. They had also discovered a leaky mitral valve with regurgitation, which of course could not be repaired. Not great news, but also not life-threatening. With a large amount of relief I exited the waiting room, leaving my husband with several other families that were awaiting news on numerous procedures being performed on their own children. I was going to the room where all mothers of heart babies go who want their little ones to be fed breast milk…the pumping room. None of our babies can nurse, but the hospital staff does everything they can possibly do to tube feed or bottle feed this liquid gold to these little troopers.

As I practically skipped into the waiting room and approached my husband I excitedly exclaimed, “I get to see my sweet girl in 20 minutes!” As our gazes locked I sank into my chair and then sat stunned as he told me that an early echocardiogram had shown a blood clot on her heart, requiring an emergency second surgery. As we were told later, upon opening they discovered not one but FOUR clots that had to be removed. The irony was that we had, after much thought, discussion and prayer, enrolled her in a trial study involving a drug that the University doctors feel could benefit HLHS (Hypo Plastic Left Heart Syndrome) babies in the future. It is a drug that actually consists mainly of antioxidants. It has been approved by the FDA for over 40 years and has been used for adult heart patients in Europe for a very long time to help improve heart function after trauma (which explains why they want to try it on CHD infants). It is also used to prevent liver problems after a Tylenol overdose has occurred and is used in children with Cystic Fibrosis to help thin lung secretions. One more use is to prevent kidney problems in some patients receiving intravenous contrast for radiology studies. It just had not been tried on heart babies yet and so she was number 15 of 20 TGA babies that they wished to try this with. Had we not allowed them to do this, her first echo would have been a few hours later than it was. By then, a tragedy could have occurred such as a stroke. Now we REALLY KNEW what “tough going” was….or did we?

As the weeks passed, our lives revolved around Rachel’s ups and downs, recoveries and set-backs. We learned what felt to us like a whole new language. Terms such as blood gas, transfusion, Lasix, Dopamine, atrial pressures, sprints, poundings, output, Aldactone, lipils, TPN, Chloryl, morning rounds, lockdowns, echo and so much more, appeared in everyday conversations for us. It was confusing, but the hospital staff did all they could to help us understand what was happening with our baby. Their patience with our endless questions was profoundly touching and emotionally critical in that we, her parents, were simply helpless bystanders. Once we had handed her over to their medical expertise, most decisions were theirs to make. We tried to understand that they had the clarity of mind to decide what the patient needed without emotion clouding their judgment. For us, each decision could have become agonizing and taken too long for her to receive the immediate care that she deserved. We caught many glimpses of true affection and compassion toward our daughter; however, she had to be kept alive with medical knowledge and objectivity at every turn.

Long distance calls, followed by tears after hanging up, kept me in touch with our two older daughters. They came to stay for a weekend, but this was tough because then we couldn’t be by Rachel’s bedside very often. Although we knew she was getting 24 hour intensive care, we still felt we needed to be there. There were literally times when she would be doing great, we would leave the room for 20 minutes, and come back to her bed surrounded by doctors brainstorming on what was wrong and what they could do to stabilize her. Over the course of weeks she experienced pneumonia, severe infection, chylis (requiring drain tubes to remove excess fluids from around her lungs as well as removal of all feedings), and a catheterization to check for one other possible defect only to find a more serious one. It seemed that her heart was also very “stiff”. It squeezed perfectly, but couldn’t relax enough to allow the blood to fill her heart properly. We were told by the surgeon himself that he had never seen this anomaly with this specific heart defect, and that although he felt it was a temporary condition, there was a chance that it was a muscular structure issue that would worsen, causing the necessity for a heart transplant. Now we definitely KNEW what “tough going” could be.

As time went on and Rachel slowly progressed, I was taught how to be her caregiver at home. I was instructed on how to take her heart rate, administer her four medications on a strict schedule and insert her NG (Nasal Gastric) tube in order to feed her without a bottle. It was terrifying and thrilling all at once. After three very long and difficult weeks we were going home! A few hours later, it all changed. She couldn’t hold any of her food down that she was getting through tube feeds. It was a special formula that would ensure the Chylis not returning, and although it is the only option for babies with that condition, it doesn’t always agree with them. So back to breast milk we went, possibly setting her up for Chylis all over again. For a few more days all went well, so again we were told to pack up and head on home. For about 30 minutes we were prepping to leave, (we even signed discharge papers), however a second opinion on her chest films looking a little hazy caused “strike two”. So again we spent the night. Apparently, these situations crop up frequently with heart babies, and one must just take it in stride. At last, at exactly four weeks old, Rachel was discharged.

As we kept family posted daily via a terrific website called CarePages, we were also keeping a daily journal for Rachel to look back on in years to come. She will always know that she was loved from the moment we knew she existed and that she is a true testimony of hope to all. She will be raised knowing that there are so many babies that lose the battle all too soon, and that there are people everywhere who care enough to do everything they can to help these beautiful little people have a fair chance at life. Her heart will always have a close bond with those babies that, though valiant efforts were made, were not able to stay with us here on earth. We especially pray that she is able to touch the hearts of families that experience the joys as well as the sorrows that are ever present when a heart baby enters their lives, even if only for a short time.

Arriving home and adjusting to life with a new baby is a huge challenge for any family. Adjusting to a life with a special needs baby sometimes feels impossible…but then you look into their trusting eyes and you know that although you know what “tough going” is, you have nothing over these wonderful, beautiful, courageous heart babies. They start out their life with a battle that all of us hope we never have to experience, even into our old age. They face a life ahead of them that could require heart medications (possibly presenting challenges with many medicines to relieve common cold symptoms or allergies), lifelong visits to their cardiologist, and will always be at risk for endocarditis (an infection in the heart’s valves). This risk entails the necessity to always take an antibiotic before having any dental work or invasive procedure performed.

This may not be all, for their conditions can change in one moment of time. Yet they smile, they laugh and they love unconditionally. They persevere over the obstacles that are put in front of them. They approach life with enthusiasm and courage. That, my friend, is the most miraculous example to witness on a daily basis. That, my friend, is the definition of enough strength and hope to inspire anyone facing challenges in life. That, my friend, makes it worth any “tough going” that has been thrown our way.

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