Saving Little Hearts

Our story begins in Hawaii where my husband, Jason, and I were stationed. I found out I was pregnant right after Jason left to train cadets at West Point. He came home when I was almost five months pregnant.

I had to go to my five month check up without Jason. I found out we were having a boy. We already knew in our hearts that it was a boy. We even had a name picked out, Kael(mighty warrior) and Keoni, (John). The x-ray tech was unable to see everything due to the way Kael was positioned and I was asked to come back to make sure that everything was ok. Jason and I went back a week later and had the same x-ray tech. She noticed an arch was missing from Kael’s heart. She brought another tech in to make sure she wasn’t overlooking anything. Still unable to locate the arch, they called the head of OB. Kael was getting pretty irritated that so many people were disturbing him. He kept kicking the scope. That was our first sign he is a fighter.

The Ob finally looked at us and said he was going to send us to a pediatric cardiologist where he can use an echocardiography. At this point Jason and I just looked at each other. We had no idea what a echocardiography was. I was getting nervous.

We went to meet Dr. Mahnke, who explained that he and his associate would look at the echo and talk amongst themselves and afterwards he would explain everything to us. I remember that day so clearly. Dr. Mahnke brought us in his office which was not a good sign and especially not a good feeling. He preceded to tell Jason and I that Kael has a Congenital Heart Defect or CHD. CHD affects 1 in every 115 births each year. Kael’s particular defect is complex and rare, known as Double Outlet Right Ventricle, (DORV, both aorta and pulmonary artery arise from right ventricle), type Taussig-Bing,(a rare type of DORV that also includes a Ventricular Septal Defect or VSD-a hole between the two lower chambers and Transposed Great Arteries-the aorta and pulmonary artery are flipped flopped), and Pulmonary Stenosis, (a narrowing in the pulmonary artery. DORV accounts for less than 1% of all Congenital Heart Defects and Taussig- Bing accounts for only 8% of all DORV.

I would later learn that to even give the diagnosis while still in the womb is a miracle in itself. Dr Mahnke wanted us to come back in 3 weeks to make sure his diagnosis was correct. Jason and I were shocked, speechless and in denial. I wanted to believe we would go back in 3 weeks and Dr Mahnke would say he made a mistake. I really prayed and believed that God would take care of us. God did take care of us, just not in the way I originally hoped.

We went back 3 weeks later and heard the same diagnosis. Kael would have to have at least one open heart surgery to correct the defect and his recovery time for this procedure usually is 1 week to a few months. We would have to go to San Diego because Hawaii does not have a facility to handle that type of care. Dr. Mahnke gave us two other choices, We could abort or we could choose not to have surgery; take the baby home and let him pass on his own. We never considered either of these options. However, at that moment it hit me and my whole world changed. Our lives would be completely different.

We told our good friends in Hawaii, and something Mandy said has always stuck with me. She said, “ Maybe God choose you guys to do this because he knew you could handle it.” She made me realize that this was God’s plan for not only Kael, but for Jason and I too. Instead of praying for a miracle, I started praying for guidance. To be honest, I wasn’t ready to learn more about Kael’s particular defect, I just wanted to know what we needed to do to fix it. I started doing research on children’s hospitals, especially on Vanderbilt in Nashville, TN because that is where my parents and a lot of friends live. I knew we would need lots of support. I sent the info I found to Dr Mahnke and he took leave to fly from HI to TN to find out even more information. It is one of the best hospitals in the country and Dr Mahnke told us it was a great choice.

Under the assumption that we were only going to be gone for 2 or 3 months, we left all our belongings and our apartment in the hands of a good friend. We left Hawaii when I was 7 months. Kael was born at 41wks. My delivery...well that is a whole other story. Kael spent 8 days in Neonatal unit and had his first open heart surgery, (arterial switch, closure of the vsd, and fix DORV), at 8 days old. His surgery lasted 8 hours; it was by far the longest 8 hours of my life, and I know Jason’s too. Even though we were educated on what a child might look like after surgery, NOTHING will ever prepare you for seeing your child for the first time after an operation like that. There were tubes everywhere, attached to all parts of his tiny body. His skin was gray and his body swollen with fluids. His incision was still very fresh. There were monitors beeping, but the room is so quiet and still. It is the worst feeling to know that your child had to endure this and there was nothing you could do to change it. I have never felt so helpless.

Kael was only in intensive care for 3 days and then moved to his own room. He was doing awesome. We stayed in the hospital for a total of 3 weeks. This was longer than expected but, Kael had also been diagnosed with urinary reflux where urine splashes back into his kidneys which caused him to have a urinary tract infection.

After his release from the hospital, we were told that Kael needed to stay close to Vanderbilt for monitoring in case another surgery was needed. During this time, we found out that Jason was to deploy to Afghanistan. At once we got together letters from Kael’s surgeon, cardiologists, social worker and even the Chaplin at Ft Campbell to state the importance as to why Jason needed to be here for Kael and I. Jason was told he would receive a compassionate reassignment to Ft Campbell which is 45 minutes from Vanderbilt. When Kael was 5 weeks, ( only home for 2), Jason left for HI to gather our belongings and ship them to TN. He was only supposed to be gone for 2 weeks . When he arrived in Hawaii, his Platoon Sergeant informed him that the compassionate reassignment did not go through. Instead, he would be deployed to Afghanistan with the sniper/scout unit for a year. Jason immediately had to put all our furniture in a storage unit and send me the car since we hadn’t had one since we got to TN. Just like that he was gone. We didn’t get a goodbye or anything.

Kael was in and out of Doctors’ offices from the time that we left the hospital. At 4 months we went in for a checkup and did an echo. His pulmonary artery looked like it wasn’t growing. This was something that Dr Kavanaugh, (Kael’s cardiologist), had been watching for. Kael needed a heart catherization to determine how severe the pressure on his right side actually was and to determine how soon he needed to have surgery. One thing was certain , he would need a second surgery. Dr Kavanaugh told me I needed to Red Cross Jason immediately to get him home.

Jason was unable to get back for the heart cath that showed we could not wait very long for another surgery. I sent two Red Cross messages to Jason in Afghanistan. His Platoon Sergeant told him he wasn’t going to come home even though before he left he was told he would be able to get home if he needed to be here. I felt Jason needed to be here. Kael needed him here, I needed him here. I decided to take action. I contacted two TN Senators and one LA Senator. These Senators contacted Congress. It literally took an act of Congress to get Jason home.

Kael had his second open heart surgery, a patch placed on his upper Pulmonary artery, at 5 months. One would think it gets easier seeing your child in that condition. It doesn’t. Jason was able to be there for the surgery, but had to leave while Kael was still very sick in the hospital. During the stay at the hospital, another heart cath was performed because there was still pressure in his right atrium. After the cath, Kael became extremely ill. He was dehydrated, had large amounts of bloody stools and was throwing up blood. Even though I had family and friends there for support, I was mostly at the hospital by myself having to make decisions that could affect whether my son lived or died. For the first time I realized that the two most important people in my life were literally fighting for their own.

At this point, the cardiologist didn’t know at what to do. GI doctors came and ended up doing a colonscopy and a upper GI to try and determine why he was having bloody stools. Essentially, they told me he was allergic to milk. Kael had one open heart surgery, one heart cath, and a colonoscopy all within a week and a half. That is a whole lot for one tiny body.

After that scare at the hospital, I had to work extra hard to get his weight up. I did not want a feeding tube in him. I felt he had gone through enough and we knew he would probably go through more. I couldn’t put him through another trauma. I would wake up every hour at night because he would eat better when he was half asleep. We continued seeing doctors regularly. Unfortunately a common cold for a heart baby can become something very serious. But for the most part, Kael was doing pretty good.

We started food therapy when Kael was almost a year old. He didn’t want to eat real food, but at the same time we didn’t want him off of his high calorie formula in case his weight dropped. I never knew a toddler that didn’t want to eat a cookie.

Kael had his next procedure at 15 months. He had another heart catherization. Kael’s lower left and right Pulmonary artery were not growing and the patch from his second surgery was leaking, causing blood to back up in his tricuspid valve. He also had a medium size residual left from the VSD that was unable to be reached during his first surgery. The cath was just supposed be used as a tool to gather information so the doctors could determine Kael’s third surgery. By a miracle, (God has provided us with lots of those),the doctor who performed the cath was able to get a stent placed in Kael’s lower right PA and this stopped the back up to his tricuspid valve. Although the stent will have to be replaced as Kael grows, we are hoping we could do more caths than having him go through so many open heart surgeries. This was definitely a blessing from God. Jason was to come home three months after Kael’s procedure. It is always better when he is home.

Kael is now a little over 2 yrs old. He has successfully completed food therapy a month ago and is eating everything in sight. His weight is still an issue, but we are monitoring it and he is on a high calorie diet. I think Kael has officially seen almost every kind of doctor there is and is getting better at having to go. He acts like a normal two year old and at this time is not behind on any of his fundamentals. He has been through a lot of obstacles and unfortunately his battle isn’t over. We are currently waiting to replace his stent on his right lower PA and eventually we will have to put a stent in on his left lower PA. Kael will also need a valve replacement on his upper PA, but Dr Kavagaugh is trying wait as long as we can. We don’t know what the future holds. The surgery that corrected Kael’s heart was first successfully done only a little over 20 years ago. That is all the information we have. We do know this is part of not only Kael’s life, but mine and Jason’s as well. Kael will continue to see doctors for the rest of his life. We continually pray that research and technology will benefit Kael and all the other children born with CHD. It is important to create awareness for these children. Kael brings joy to our lives every day. He is a gift. I have learned more from my son than anyone else in my life. I’m amazed by how often life is taken for granted after watching my child endure something like this. Each day is special. Each day has meaning. What a blessing God has shared with us.