I am a very blessed man with three beautiful children and a beautiful supportive wife Christine. Max is our 2 year old son and we have twin daughters who are 18 months old, Chloe and Kendall. When we found out we were having another baby after we were surprised. When the ultrasound technician muttered the words Baby A, our jaws dropped. It was one of those feelings that people always joke about but the way our luck has it we were the ones blessed enough to have it actually happen…. Twins.
When the girls were born they had a few things that the doctors would have us spend some time on. They were enrolled into physical therapy (PT) and occupational therapy (OT) due to some unexplained high tone issues and had to see a cardiologist at the local children’s hospital for a ventricular septal defect (VSD) which is a hole in the wall separating the two lower chambers of the hear. They responded exceptionally well to the PT and OT and after the initial consultation with cardiologist were cleared with a clean bill of health.
On February 28, 2016, I was working on the house with the girls staying home while Christine went shopping with Max. I put the girls down to nap like normal and when they awoke, Chloe wasn’t acting herself, Christine noticed that she wasn’t using the right side of her mouth to chew food. When she asked me my opinion on Chloe, I just chalked it up to her not feeling well and catching the cold that her sister Kendall had the week prior. Soon the day was coming to an end and we bathed and put the kids down as normal. In the morning, Christine noticed that she was just lying in her crib wide-awake versus her normal happy self, cruising along the railing. Christine walked in very concerned and said that she wanted to take her into the doctors later in the day and called for an appointment. I picked up Chloe and began to play with her, I started tickling her and she didn’t respond, then I ran my finger along the bottom of her foot and no reaction. I then ran my finger on her left foot and had a reaction. To confirm, I then gave her right leg a pinch and she didn’t move, I did the same to the left leg and she reacted. I told Christine that I was going to get dressed and take her to the ER at Children’s.
Immediately, I was checked in to the ER and a flood of doctors surrounded my daughter and bombarded me with questions and then the same questions again. Then more doctors entered and rushed my daughter to the computed tomography scanner (CT Scan) to have x-rays done on the her body. Shortly after, a neurologist came to meet me and pulled up the computer screen. He pointed to a large black spot on the image and told me that Chloe had suffered a stroke and is having paralysis on the right side of her body. She was admitted to the Pediatric Intensive Care Unit (PICU) at the hospital where they ran every test possible on a child. We met with neurologists, cardiologists, physiatrist ( physical medicine and rehabilitation doctors), hematologists, and a ton of nurses. They confirmed the stroke and through an ultrasound found a blood clot in her right hip. They were able to stabilize her for the remainder of the day and said that they scheduled more tests for the next day. I ended up staying the night with Chloe and Christine went home to be with the rest of the kids.
The next morning, everyone picked back up and ran more tests. This time they were trying to find out where the clot could of made its way to the brain and through this test they introduced me to a new phrase…. Restrictive Cardiomyopathy. I counted 17 doctors and nurses in the room at this point. I eventually looked at one of the attending doctors and asked her to translate for me. She knew it was a lot of information being thrown at me and when the doctors were having a side bar discussing things in a language that was foreign to me, I asked her what’s the best case- worst case scenario, she replied “heart transplant”. We met with the transplant director and he explained everything to us. Her heart was stiff and enlarged, which was causing issues for the chambers to fill with blood. He said that Chloe would be a high risk transplant due to the blood backing up in her lungs and caused those pressures to be higher than normal. I was speechless, how could this be happening. We were very concerned at this point not only for Chloe but for Kendall and Max as well. They scheduled Kendall the next day for her testing and Max the following day.
Kendall’s echocardiogram (ECHO) testing of the heart, confirmed that she also had the same restrictive cardiomyopathy as Chloe, but didn’t know how progressive it was until I went through and had some additional testing’s done immediately. The doctor scheduled everything for me to have done immediately and sent me to have X-ray’s and blood drawn. I don’t remember much about these other tests other than the technician at X-ray walked me from his office to the next probably knowing that I was a zombie. I can remember him asking me several times if I was alright. It was at the end of all of those tests where Kendall’s prognosis was discussed. They could tell through the blood draws that her heart failure was not as bad, but let us know that there is no magic number that they could tell us on when they expect it to take a turn for the worse or what that turn would even look like.
Max was tested the next day after Kendall and as much excitement as one doctor can have in giving good news this doctor had it. He made sure before we walked out of the office that we knew Max was in the clear from any of this Restrictive Cardiomyopathy business. Truthfully, we needed to hear some good news at this point because if Max had this as well our lives would have been crushed.
Chloe spent a better portion of 3 weeks in the PICU rehabbing through her stroke and eventually got to the point where she was able to be transferred to the Cardiac Intensive Care Unit (CICU) floor with the rest of the cardiac patients. The transfer came after her first catheter. The results confirmed the high lung pressures and the gave enough data that Chloe would be listed as a 1a on the organ donation list. She had a long battle of being hospitalized this entire time until we got the phone call on May 10th at 10PM that they have a donor and think it’s a perfect match. I was out of town on a business trip and found myself catching the redeye to get back home. Chloe received her heart on May 12 around 12:05 AM. She came back from surgery on ECMO, which is short for extracorporeal membrane oxygenation and its purpose is to mechanically act as the lungs and heart until her body was ready to take over. We knew she was a high risk transplant candidate going in the unit but you never know what that means until your room is filled with machines and equipment. Chloe was eventually released on July 2nd. Where she was able to finally get outside free from cords and wires and enjoy her very first parade on July 4th, her very own independence day in a sense.
Kendall’s experience with this process was completely different than her sisters. She was able to be at home on medications and have clinic visits until she eventually plateaued enough that it was time to be admitted in early June. We had built such a rapport with the hospital that we were even approached to do a documentary on the transplant process and agreed to have the entire process filmed. One day after work, June 30th, I picked my son up from the babysitters and he said that he wanted to go see his sisters. At this point it was just him and me at home as my wife and I were alternating nights at the hospital and home with Max. During our car ride to the hospital, I received the phone call from the doctor who said that he found a great match and that we should start lining up someone to watch Max as this is going to be a long night/ early morning. The media team, my wife and I all spent time with Kendall up until they took her back for surgery. Kendall ended up receiving her heart on July 1. Unlike her sister, Kendall came out of the surgery doing great. Within 3 days she was sitting up and eating on her own. She recovered so well that they said at the 7 day mark they’ve allowed some people at her milestones to go home, but felt that it was too quick and there were a lot of things that they had to watch due to the fact she couldn’t talk and provide them with any information so they wanted to be sure. I can remember every day walking into the hospital and being stopped by the doctors and told “she is a machine”. Kendall was released July 16th to go home. After nearly 5 months of being separated, my family was finally back together.
As we look back at this entire process and try to connect the dots as to how and why this happened, the one thing that we know we are grateful for is the fact that Chloe had her stroke. As sick as that sounds, we would have never known about the heart failure until one day something more devastating could have happened. Now that the girls are home, my wife and I can now see just how sick the girls were. They are both thriving at home and catching up to their developmental milestones. The journey isn’t over as heart transplant isn’t a cure, but after all that we have gone through I will take this new normal of medicines and follow up doctor appointments any day over what we just went through.