Did you know 1 in 100 babies are born with a Congenital Heart Defect? It’s the leading cause of death in children, more so than all types of childhood cancer combined.
I didn’t know this until I found out my daughter needed a heart transplant…
A little back-story…
Paisley Mae Arnold was born October 3, 2012 via C-section. We were scheduled to have a C-section on the 4th due to her being transverse breech, but Paisley decided to come on her own time. On October 3rd, my husband and I went to get my pre-op paper work done and register at the hospital. It took most of the day, and we were starving. After we finished, we met my mom and grandma for lunch. At the end of lunch, my husband got up to use the restroom before we headed home, and a few minutes later I decided I should go too. When I stood up, a gush of water came out! I hurried to the men’s bathroom. Luckily my husband was already washing his hands. I popped my head in the door and said: “Babe, I think my water just broke!” “WHAT?!” he exclaimed, “are you sure?!” I said “Ugh, ya!” (with tears streaming down my face). I was terrified. I wasn’t ready. I wasn’t suppose to have to her until tomorrow.
When we got to the hospital, we went straight to Labor & Delivery, and they put me in a room and checked me–I was already 2 centimeters dilated. After enduring hours of painful contractions and a C-section, Paisley Mae Arnold was born at 7:03 pm, weighing 6lbs, 6oz and was 18 inches long. She was beautiful. I didn’t get to be with her right away, because I had to spend 3 hours in recovery; instead, my husband went with her and was lucky enough to hold her and give her the first bath. I remember coming in and out of consciousness asking to see my little girl, and finally, around 11pm, they wheeled me to my room and let me hold her. She was perfect. Her nose was bent to one side because her face was hiding underneath my ribs, but she was perfect, and healthy…or so we thought…
Paisley was such a good baby! She wasn’t too fussy and she slept a lot. It wasn’t until about 6 weeks that we noticed something was wrong. She started throwing up and she hated eating–I mean, hated it! I couldn’t blame her, she couldn’t keep much down. She also had a “wheezing” sound when she was excited or upset. I made an appointment right away with our pediatrician. They suggested I change her formula and thought maybe it was acid reflux. After about a week of that not working, we went back and they ordered an “upper GI test,” and was prescribed Zantac to help with the reflux. The test revealed moderate reflux, which made sense to us. Her vomiting slowed down with the Zantac, and we were more careful about lying her down after eating; but eating continued to be a struggle, and she was hardly gaining any weight.
Fast forward to Valentine’s Day 2013…
Paisley had her 4 month check-up appointment, where we (again) brought up her wheezing, as it was getting worse (she had caught a little cold the week before) and her horrible eating habits. In 5 weeks, Paisley had only gained 5 oz! Finally the Dr. decided to actually listen to her breathing and her heart, and decided to give her a breathing treatment at the office to see if that would provide some relief. Well, it didn’t. She sounded worse! The Doctor then advised us to go to our local hospital to have her evaluated and to run some tests.
She had blood work and a chest X-ray done, and was hooked up to IVs. They continued to give her breathing treatments, which were not helping, only making her worse. We ended up being admitted and stayed the night. Only one parent was allowed to stay, so I sent my husband home for the night. The next morning Paisley was even worse, she was on oxygen and just sounded terrible. My husband came to be with her so I could go home and take a shower. I was gone maybe an hour and half when I came back to horrible, terrifying news: my baby had an enlarged heart.
The Doctor hadn’t bothered to check her X-ray until that morning. She informed us that a team from Loma Linda University Medical Center was on their way to pick her up. Wait, what?! She was healthy, and there were never any signs or symptoms? Did you know unless a baby shows outward symptoms, they don’t check them for heart defects when they are born?! You’d think it would be standard, right? You check their eyes, and their ears, so why would you not put a simple pulse-oximetry sensor on their big toe to see their oxygen level? Most Congenital Heart Defects can be found with a pulse ox. She also had a heart murmur that no one caught when she was born, which was also a cause for concern. A couple hours later, my baby girl was being loaded onto a gurney and put in the back of an ambulance. I couldn’t even ride with her. We had to follow in our own car behind them. I was in tears, and I was terrified.
The last thing the Doctor from the transport team told us before closing the doors to the ambulance was “Your daughter’s heart is very large, and right now she is in heart failure.” My husband and I cried the entire way down. The whole way down to the hospital, and I remember thinking: “I cant live without her, I need her”. Having to call grandparents wasn’t easy, to say the least. We didn’t have any idea what was going to happen. Were we ever going to bring our Paisley home with us again?
We arrived at LLUMC what seemed like hours later, but in reality was only about 45 min. I jumped out and went up to the PICU with Paisley while my husband parked the car. They had a room waiting for her, and immediately hooked her up to monitors and IVs. She was upset, hungry and very tired. They sent over a cardiologist and a sonographer to do an echo-cardiogram on her. They had to sedate her to do so, and even after sedation, she was fighting them. They were looking for an answers and couldn’t find anything. She had to have a PIC line put in for her fluids, meds, and all the blood they were drawing from her. Early the next morning we were transferred over to the Cardiology PICU side of the hospital. They again did an echo-cardiogram, and actually thought they found the problem. They thought her left coronary artery just grew in the wrong place and that they could just simply go in and “rewire” it.
The hospital intubated her late that night for the procedure, and when babies are intubated parents are not allowed to stay with them. So my husband and I left to stay the night at a hotel. We returned early the next morning, and were confident and hopeful it would be what they were expecting. The cardiologists had seemed very confident. We walked with our girl down to the cath lab and kissed her goodbye. They took us to a conference room to wait-the room we now refer to as the “bad news room.” The procedure took a couple hours, and we were anxious and going crazy. What happened next changed our lives forever…On February 17, the cardiologist came into the “bad news room” and said:
“Your daughter was born without her left coronary artery entirely, and the only way she will make it is with a heart transplant. She is a great candidate for a heart transplant.”
Wait, what?!!! I started crying instantly and my husband stared blankly, “numb” as he describes it. A heart transplant was the only way our baby girl was going to live? How can this be? Four days ago she was perfectly fine and happy! Being born without a left coronary artery isn’t very common. It’s actually the first time LLUMC had seen this. How did she survive 4 1/2 months? When people have heart attacks and the left coronary artery becomes occluded, the likelihood of death is very high; hence its name, “The Widow Maker”. Paisley didn’t have one at all, ever. Somehow her little body built enough collateral circulation to keep her alive.
The Doctor left us alone and my husband and I cried together. Then, Rick went down stairs to bring up our parents to tell them the news. When they walked in I was crying too much to even look at them. My mom came right over to me and held me. I cried to her. “I can’t live without her,” I said. We all sat and cried together. No one could ever prepare you for that, telling you that the only way your baby will live is if they get a new heart. People wait months and months for donors. How long would it be for us? Would we even make it long enough?
That day seemed to drag on forever. I had to fill out paperwork asking all kinds of stupid questions. I couldn’t even do it, my mom had to. We had to meet with a social worker, and were asked a series of questions to see if our family was capable of caring for a transplant child. They even asked us if transplant would even be an option for us. Of course! IT WAS THE ONLY OPTION! Getting listed on the UNOS list (United Network for Organ Sharing) is a long process, usually taking 2-3 weeks. On February 20, Paisley was listed, setting a record for being listed in only 3 days! Paisley stayed intubated, sedated and in quarantine due to somehow getting RSV (we think from the lousy local hospital) and we had to wear gowns and masks when we went to see her. She was also placed on medicine to help her heart contract and to help with arrythmias.
I fell ill in the next few days, from exhaustion and stress and I couldn’t be around her. I felt horrible that couldn’t be with my baby when she needed me the most, but it was what was best for her. We found out on a Sunday that she needed a heart transplant, and by the following Wednesday Paisley had deteriorated. We had to leave every morning and night from 6:30-7:30 for shift change, and that Wednesday night I stayed to get some rest in hopes of feeling better the next day. Rick hadn’t been back at the hospital 20 minutes and he called me and said: “Something happened. I’m coming to get you,” and hung up. I tried to call him back but he didn’t answer. I tried again and this time he answered. I said: “What happened?!” He said: “I don’t know, I was just sitting there and all the sudden her heart rate sky-rocketed and then dropped really low and they started doing chest compressions on her. I’m almost there to get you.” I immediately called my mom, but she didn’t answer, so I called me sister, crying hysterically. I managed to tell her what happened and they said they were on their way.
Rick dropped me off at the front of the hospital, and I ran as fast as I could up to the 5th floor. By the time I got there she was stable, but her room was filled with nurses and doctors. No one knows what really happened. They told us that she was getting worse and weren’t sure she would even make it through the weekend. They said we should consider ECMO, which is basically a heart-bypass machine that pumps and oxygenates the blood throughout your body. ECMO is considered end-of-life care, unless you receive a donor heart. The longest you can safely survive on ECMO is about 2-2 1/2 weeks. They were telling us our time with our baby was limited. How could this be happening to us? You hear stories about this kind of stuff but never think it’ll happen to you.
Then, they offered us the option of a Berlin Heart, which is an external ventricular assist device that does the work for your heart. You can live for months on the Berlin Heart, hopefully buying enough time until a donor becomes available. In Paisley’s case it would work for the left side of her heart, but the problem was that they had to order it from Texas! They haven’t done many Berlin Hearts in America (around 40 nationwide) so they only keep supplies in Texas. Due to having to wait for the Berlin Heart, Paisley was placed on ECMO on Friday, February 22. She went into surgery to have the ECMO cannulas placed, one in her carotid artery and the other in her jugular vein. The surgery took three hours. When she came back, she didn’t look like Paisley anymore. She was swollen and covered in betadine, and laid lifeless in her crib. All we could do was sit next to her and hold her tiny hands.
After a very long and stressful weekend (if we weren’t stressed enough), Monday finally came. On February 25th, Paisley went into surgery again for the Berlin Heart and to be taken off of ECMO. They said it would take about 6-7 hours, because having the Berlin placed is open heart surgery. I swear, time stood still. We got a few updates here and there. One person came by and told us she was doing great, then a couple hours later someone else came by and said she wasn’t. They said she was bleeding a lot and that they were still trying to get her off ECMO. Finally, at about 8:30 p.m., we were called up to the “bad news room.” Her surgeon met us there and explained to us that she had lost a lot of blood, which was expected, but the Berlin placement went well.
However, for an unknown reason, her lungs had filled with blood, so they weren’t able to take her off ECMO completely. They were able to take her off ECMO of the heart, but now had to be placed on ECMO for the lungs (a dual lumen cannula was now placed into her superior vena cava). Paisley is the smallest baby to ever receive a Berlin heart at LLUMC and also the first baby to be on ECMO and the Berlin at the same time. She needed the ECMO to let her lungs recover, but how long that would take?? No one knew (there were a lot of unknowns throughout this journey as you’re finding out!)
Hearing this was just the cherry on top. We had received bad news after bad news since this began. What more could happen? How much more could my little girl take? She came back from surgery even more swollen and her chest still open. She was too swollen to close immediately. To help her lungs recover, she was switched from a regular ventilator to an oscillating ventilator (a regular ventilator delivers a lower amount of ventilations per minute with higher tidal volume, and an oscillating ventilator delivers a very high rate of respirations with a lower tidal volume) so her whole body was shaking violently. We were also told that Paisley’s kidneys were no longer working efficiently so they would have to place peritoneal dialysis catheters in to allow her to drain backed-up fluid. I fell apart when we were finally allowed to see her. No one should have to see their baby that way. We left the hospital around midnight, not knowing what the next day would bring. We didn’t know if Paisley would even make it through the night.
The Turning Point…
The next morning we came in expecting more bad news, only to find Paisley’s room filled with doctors and nurses high-fiving and smiling. Her chest x-ray had showed major improvement and they would be taking her off ECMO the next day and her kidney function improved drastically! Paisley ended up being intubated for 21 days, and for 21 days I could not hold her. Those were the worst 21 days of my life. When I finally was able to hold her, it was like holding her for the first time all over. I had missed her. Her smell, her tiny little body cuddling with mine. We had been through hell an back, and in that moment it all disappeared.
My husband and I spent everyday at the hospital. I called 2-3 times every night. That had became our life, and we didn’t expect it to end anytime soon. It had been 3 weeks since Paisley was listed on UNOS. On Saturday, March 16th, Rick dropped me off at the hospital, and he headed home to go check on the house and turn on the sprinklers. Paisley and I played, but mostly she slept, and a few hours later Rick was back with us. About 2:00 p.m., a nurse walked in our room, wrote something down on a piece of paper to one of Paisley’s nurses and left. That nurse then got up and showed the other nurse in the room then walked over and turned off Paisley’s meds and IV nutrition. I knew something was up and asked what she was doing. She said she was told to shut them off and didn’t know why. Yeah right! Silently hoping it was good news, and Rick and I just looked at each other.
About 30 minutes later, one of the nurses walked over to us and said: “Nothing is concrete but, there is a potential heart for Paisley.” Wait…WHAT?! She told us to stay calm, because it wasn’t for sure yet, and it was a very long process to even accept the heart. Twenty minutes later the cardiologist that initially gave us the worst news we could ever hear, called to tell us the best news we could ever hear: They had accepted the heart for Paisley and would be sending the surgeon and transplant team that evening to go harvest and bring the heart back. By 7:00 p.m., they were on their way. All we knew was that the donor was in Arizona.
We called our families and told them the great news, and they all came down to be with us. They took Paisley down to the OR because they had to have her prepped and ready by the time the team returned with the heart. Did you know the heart lands at a local airport and then is delivered to the hospital in a limo?! Pretty fitting if you ask me.
We kissed our little girl goodbye feeling nervous and hopeful. She had already been through so much and this was another open heart surgery. We had the waiting room to ourselves with all of our family, and for a while, all we did was sit around and talk. Eventually, everyone except Rick and I had fallen asleep. I was feeling a million emotions that night; Excited, nervous, and heart-broken for the family that had to say goodbye to their angel and make such a selfless decision. How could I be celebrating when another mom somewhere was heart-broken? I felt terrible, but at the same time knew this was God’s plan. What’s cool about modern technology is they were sending us texts throughout the surgery! They notified us at the start of surgery, when they had removed the Berlin Heart and sewed in her new heart, telling us she was off-bypass, and finally to meet the surgeon in the “bad news room.” Only this time, it wasn’t bad news!
He informed is that the surgery went perfect, and that the heart matched up perfectly. Mind you, this all happened on the eve of St. Patrick’s day. Her new heart was officially sewn in, and working on March 17, 2013, St. Patrick’s Day, which we now refer to as St. Paisley’s Day!
Paisley looked amazing, considering she had just had surgery. They kept her sedated and intubated that day, but the next morning she was awake and extubated! Man, my girl is tough! Paisley healed and recovered better and faster then most babies do, especially after what she had gone through in such a short amount of time. The only real problem we had was she struggled with eating still, but that’s normal for transplant children. Nine days post-transplant we were discharged. We couldn’t go to our home just yet because they wanted us nearby, JUST IN CASE. So, for 2 1/2 weeks we stayed in the nearby apartment Rick and I had been staying in for the last 2 months. It was an adjustment at first.
She has, and still has a strict eating schedule. She eats every 3 hours and is on a high calorie formula until she catches up on weight. She was sent home on 12 different medications. (Immunosuppressants, Methadone, blood pressure medicine until her body adjusts to her new heart, viral and fungal meds because they basically stripped her immune system to nothing, and breathing treatments until her lungs completely healed). Between her feeding schedule, medicines, and breathing treatments, we were exhausted…but we had our girl with us!!!
Three weeks later we got to go home! At first we were going to the Doctor for check-ups and echocardiograms twice a week. We are now 2 and half months post-transplant and she is doing great! Rick is back to work, and I am lucky enough to be a stay-at-home-mom. We are down to only going to the Doctor’s and getting echoes once a week! As more time passes post-transplant, and Paisley continues to do well, they will become less and less! We are down to only 5 medicines and no breathing treatments! The hope is to only have her on the immunosuppressants in the next few months!
She was still struggling with feedings, so we were sent home with an NG tube in her nose to help supplement what she didn’t eat by bottle. A few days ago, we took it out because she has been doing so well! She is 13lbs and thriving! She rolls over and can almost sit up by herself…for laying in a bed for 6 weeks that’s pretty darn good! You’d never know anything happened to her. She has all her scars, but those just prove how hard she fought and how tough she is! She is a true miracle. I will forever be grateful to the family and mother who made the selfless decision that day, to donate their baby’ organs. They saved Paisley’s life. If it weren’t for them, who knows if she would even still be here. I have every intention of writing that woman a letter, and try to find some words to ease her pain. She is a hero, her baby is a hero.
We are forever grateful!
The pulse ox law was passed in California 2 weeks before Paisley was born, but doesn’t take effect until June 1, 2013. A little too late if you ask me…
Here are pictures from our journey:
This is Paisley the day after we got to LLUMC
This is my sweet girl a few days after receiving the Berlin Heart
This is Paisley the day she received her new heart
The day we were discharged
This is Paisley today
I’m Charity Arnold. I am 24 years-old, and I live in Apple Valley, CA. I am a stay-at-home-mom, and have been married to the love of my life for 4 years. Together, we enjoy every moment with our sweet girl.