I am so honored to be the one to introduce you to Bella. Her mommy, Savana, finally gets to tell her story and feel heard, seen and understood. In her words, Savana tells all….
“Ysabella was born on March 21, 2018 in our hometown hospital. She was tiny at 5 lbs 4 ounces, but other than that she seemed to be completely healthy. The first two weeks went by like it does when you bring a new baby home. Bella was such a great baby and slept all the time. At that time, we just thought she was just an easy baby!
Little by little I started to notice how weird she sounded when she would breathe. She didn’t have much energy to stay awake even at a month old she slept all day long. She would be drenched in sweat every day all day long. We bathed her every single day. All she would do was sleep, but she would sweat as if we left her baking in the sun. I had tried making appointments at the clinic to get her seen but they were booked a month in advance. My three-year-old came down with a weird rash on her face, thinking it was hand foot and mouth I called the clinic and they got us in that day. The doctor checked Lily, (our three-year-old) and said she was fine it was just a random rash. I then asked him to check Bella. I told him that her breathing worried me, that she sounded like she was congested all the time even though she didn’t have a cold. He began looking at her like they do on normal checkups. He than started to listen to her heart and his face became serious. I didn’t know what was going on, but he said he had to leave the room for a second and he would be back soon. Twenty minutes went by and he still wasn’t back, I really started to panic and went out to look for him, he was on the phone with Primary Children’s Hospital and the nurse told me he would let me know what was going on after he got off the phone call. He came back in the room and told me he had a heard a huge murmur in Bella’s heart, he didn’t want to say anything at first to not scare me, but after speaking with a cardiologist up north, they wanted to see Bella right away. He told us to leave the clinic and head straight up there. I grabbed my husband from work, and we drove from Fillmore to Salt Lake City not knowing what was going on with our baby. I had never been more frightened in my life. When we got there, they took Bella in for an echo. I tried to study the tech’s face to see if I could tell if what he was seeing was bad or good, but the feeling I had told me it was bad.
After the Echo we met with Dr. Ware a cardiologist at Primary Children’s Hospital. He told us Bella had three holes in her Heart, ASD ( Atrial Septal Defect), VSD ( Ventricular Septal Defect) and PDA ( Patent Ductus Arteriosus). Bella’s ASD or PDA at the time weren’t very big, but her VSD was. Dr. Ware told us they would keep doing echo’s on Bella every two weeks to watch how her heart is functioning and they were hoping to put off surgery until she was 6 months old or 5 kilos. The only thing we had to worry about now was her weight. At a month and half old Bella was only 5 Ibs 11oz.
The next week we met with her feeding and developmental team. They set her up with a plan to help her grow and pack on some weight. Our only challenge was getting her to take a bottle. Bella refused to take a bottle, she would breastfeed, but she would only eat for a bout 5 minutes before she would become too tired. After two weeks of trying the team said it was enough. Bella didn’t have the energy to eat on her own, doing so burned more calories than she was in-taking and therefore putting us backwards. They decided to go ahead and place her on an NG tube, a feeding tube that went through her nose and into her stomach. We were admitted to Primary Children’s for the first time in the overnight ER, so they could make sure Bella tolerated feeds through her tube.
That was a long night, Bella, puked after every feeding. The nurses didn’t seem concerned and we weren’t sent home around 4 the next day. It was on a Thursday that we went home. For the next two days Bella would continue to project vomit with every feed. Saturday it got even worse, she started looking pale, her breathing became very heavy and she was very sweating even more. We called a nurse and she came to look at Bella, she wasn’t there even for 5 minutes before she told us to take Bella to the Er. As soon as we got to the Er Bella started projectile vomiting again. They took her in for an x-ray and saw a built up of fluid in her lungs. Bella was then Life Flighted to Primary Children’s Hospital, two days after we were released. I knew it was because of her feeds, she couldn’t tolerate them while she was in the hospital, yet they sent her home. We were in the hospital this time for a week and a day, the doctors insisted Bella had RSV and that was the explanation for the fluid in her lungs. I knew this wasn’t the case. Just two days after being put on the feeding tube she started having all these systems, she simply couldn’t tolerate it, I knew it was related to her heart. The doctors wouldn’t listen to me. I had to fight with them to call cardiology in the first place, I KNEW Bella’s heart was behind this and every time I said that they just simply told me I was wrong and that Bella’s heart didn’t look sick enough to be causing so many problems.
They ended up switching Bella to an NJ feeding tube. This tube again went through her nose but bypassed her stomach and went directly to her intestines. She then started to tolerate her feeds but only at 20 ml an hour, which is less than an ounce an hour. Any more than that would cause Bella to get a back up of fluid or projectile vomit. We were released after Bella started to tolerate her feeds and the fluid in her lungs was gone. That next week we met with her feeding team, they had no idea Bella was even inpatient, and that she was placed on an NJ tube. They were furious we were even sent home, Bella was showing she was struggling and the nurses didn’t even give her a second glance I explained to her feeding team what had happened, and what the doctors had told me, and they agreed with me, they too thought her heart was the cause of her feeding intolerance. They were able to come up with a better plan to help Bella grow on this new tube, because Bella still wasn’t gaining any weight. This time cardiology started to become more serious with Bella. For a couple weeks Bella was doing good, she was tolerating her feeds, and seemed to be more alert. As June started to come to an end, she started to lost weight. Her body was burning so many calories the doctors couldn’t explain it. Every Echo showed the same thing, a big VSD, a smaller ASD and a PDA that was changing in size. We started seeing her cardiologist and feeding team once a week at this point. They just couldn’t figure out why Bella wouldn’t gain in weight. Her echo’s would look good, then worse, then good again.
I had never been so frustrated, no matter what they were doing Bella just wouldn’t grow. My 5-month-old baby was acting like a newborn baby, she was so skinny she was between 6 and 7 ibs at this point, she looked so sick, and yet nobody seemed to be as worried as my husband and I were. By the end of July Bella had been hospitalized three times for failure to thrive. We would be admitted to primary children’s, they would put Bella on TPN and Lipids. TPN is where she was given fluids that bypassed the gastrointestinal tract. Pretty much the fluids were going straight into her veins to give her body the nutrition it needed. They would give this to Bella for 4 days, she would gain weight, they would transition her back to her NJ feeds and send us home. Not even four days later she would lose all the weight she had gained from the TPN and Lipid emulsions. This was a repeated cycle.
Every time she was inpatient, they would keep us on the side of the unit with the babies, or kids that came in with RSV, or other sicknesses. She was never once treated as a heart patient. This was so frustrating to me, we knew her heart was sick, they were no other signs of other sicknesses, I was given the resident doctors at each stay, her cardiologist would check in on her, but that was it. I could not understand why my daughter not growing, not advancing, sleeping all day long, not tolerating her feeds, wasn’t being treated more serious. I was sick and tired of being run around from Resident to Resident who had no idea how to help Bella. One of the Residents even said he didn’t know what was wrong with her. I wanted to scream, “Her heart is the problem!” The only person that agreed with me and listened to my husband and I, was her feeding specialist.
Finally, in august they decided to do a sedated Echo, to better see the function of her heart. After that echo, they were able to better see what was going on. One of her holes was growing, the PDA was substantially bigger than her previous echo’s had showed. This was the first time her cardiologist and the senior cardiologist had ever seen a PDA hole grow. They either are small and close over time, or they are huge to begin with. This was when they cardiologists began to see Bella’s heart is sicker than its showing. We were given two choices after the results of the echo. First one was, open heart surgery, go into her heart completely close off these holes and hope we don’t ruin the function of her heart while the repair is going on. The other worry with this procedure Bella’s size. She was only about 7 lbs (6 months at this point) so they were afraid with her body being so underweight and weak, she wouldn’t come out of such an invasive surgery. Our second option was for her to undergo a Cardiac Catheterization and close the PDA hole, the VSD and ASD could only be repaid via open heart surgery. They thought by closing this hole first we could potentially not have to have the open-heart surgery or be able to put it off longer in hopes her body will be able to grow. If the second option doesn’t help at all, she will end up needing the open-heart surgery no matter what. Her team felt it was best to try the second option first. The very next week, she went in for her cathedure procure. This procedure should have been an hour and 45 minutes and it lasted two and half hours. We learned Bella’s PDA was growing and shrinking with her heart beat. This was causing her heart to work three times as much as it should have. Her team again had never seen this happen before. They are even going to use this procedure and echos they took of the PDA while she was under to study more and teach other cardiologists.
After hearing this I started to feel a little better, maybe she wouldn’t need the open-heart surgery, maybe this will help her thrive. We were released three days after this procedure. Bella started to gain a little bit of weight, was a little more alert, seemed as if she was coming out of the “newborn stage” This procedure happened on August 13th. Near the end of August Bella’s symptoms started to get worse again. She was sweating, retracting when she would breathe, tired all the time. I knew she was going to need the surgery sooner then later. I would message her team daily, I felt crazy, I felt like the mom they were annoyed of (oh she is calling again) but I knew, and I couldn’t shake the feeling, my daughter wasn’t okay and if she doesn’t get her heart operated on, she won’t make it for long. The beginning of September they started having us take Bella to weight checks every two days, at this point Bella was maxed out on the amount of calories she could intake. She was maxed out on the amount of fluid she could intake because if we went higher than 21 ml on her feeding machine, she couldn’t tolerate it. She was getting Lasix’s twice a day (Lasix rids the body of excess fluid around the heart and lungs) this still wasn’t helping.
Her Cardiologist scheduled her open-heart surgery for October 2nd, even though they were hoping she wouldn’t need it. Bella was admitted to the hospital on September 20th, at this point she was losing weight, she wasn’t growing in height and her head had stopped growing as well. My daughter was just there, not improving, slowly getting worse, and I had no idea of how to help her. But yet Again, they placed her on team Veasy ( the Residential doctor team) I blew up, I told them I didn’t want this doctor, I wanted her to be seen by her cardiologist at this point just a cardiologist, I didn’t care, but I wanted a doctor that knew how to help her, that wouldn’t give me the run around. But they didn’t do it. Bella’s feeding specialist was in our corner, she fought so hard for the doctors to see Bella wasn’t okay. Her feeding specialist told them if they sent Bella home again or even tried, she was getting the hospital directors and getting child safety involved. My daughter was failing, in and outside of the hospital, but it was like her specialist was the only person who saw it besides Jesus and I, this was her 5th time inpatient, and I was not going home until they helped her.
My husband and I told every nurse, doctor, tech, anyone who would listen that we knew her heart was the reason her body was failing. We knew it was and we just wanted them to fix her heart. For the next two weeks they ran every blood, urine, stool, x-ray examine you could possibly do on a baby. You name it they tested for it. Nobody believed her heart was still the factor of her body failing her. Every doctor we talked to insisted it had to be something else. Right when we would think it was over, they would come up with another test to run on her. It got to be so much that the phlebotomist had to tell the doctors we couldn’t pull any more blood out of her. Her veins couldn’t handle it anymore. They were done. Finally, after I had a melt down with her team on rounds, they started to listen.
After the testing was over and everything came back normal, the only explanation left was her heart. Surgery day came, I was a wreck, my husband was a wreck. We knew what the side effects were, we knew what could go wrong. Her body was already so fragile, she was so underweight, but her only fighting chance was this operation. We sat in the waiting room anxiously awaiting every update they would call us with. She was taken back around 6:30 in the morning, she was the first case of the day. She was out of surgery and in recovery around 2:00 in the afternoon. They took us back to see her around 3:00 PM.
The Surgeon really was amazing. He took us into a room and told us Bella’s heart was worse than her echos had shown. Her VSD was growing behind her tricuspid valve. This they had never seen before. They had to take out her valve to repair the VSD, it was significantly bigger than her echos had ever shown as well, because in an echo you cannot see behind the heart. They were able to patch the hole, patch her ASD, and successfully repair her tricuspid valve. The Surgeon told us, it was a good thing Bella had the operation when she did, she wouldn’t have made it waiting months for a surgery like her doctors wanted her to. I felt a sense of relief wash over me. I knew her heart was so sick, nothing else made sense, her body failing her didn’t make any sense if her heart wouldn’t have been sick. Her heart was failing, but not to the point of needing a heart transplant, but to the point where it was causing her body to fail.
The days after her operation, Bella quickly recovered, she was out of the CICU in a day. She was taken back up to the cardiac unit on the third floor. She was only on nasal oxygen for two days, and she was off the Chest tube in three days. She was taken off Lasix before we even went home! She slowly started to gain weight too. Occupational and Physical Therapy came and ran exercises with her every day. They were teaching her to roll over, sit up, play with toys, pretty much teaching her how to be a “normal” healthy baby.
We were starting to see our baby thrive for the first time in almost 8 months (her whole life). Her following Echos showed her heart beating strong, not having to work so dang hard. Bella was released from the hospital two weeks after her operation.
They are still monitoring her and watching her growth. She is still on a high calorie special formula to help her grow. She is almost a year old and 11 lbs, she is very tiny! But she is growing, she is crawling, she plays! She no longer needs her feeding tube, she takes a bottle now! She rarely sleeps during the day, she isn’t sweaty anymore, and she even has the cutest little cheeks now. We still aren’t out of the clear, the cardiologists are monitoring her heart where they had to repair her tricuspid valve, there was some leaking around it in the last echo, she could potentially need a donor valve in the future. As for now, she is thriving and, in my eyes, healthy. I want other parents to know it’s okay to speak out, don’t be afraid to tell the doctors what you think. You are the parent, you know your child better than anyone, you are your child’s only voice. Don’t let anyone make you feel crazy or that you don’t have a say in your child’s health. There isn’t enough research or knowledge about CHD. Until there is, we as the parents must be their voice. The doctors can only do so much. Our cardiologist really fought hard for Bella, but her heart was a new ball game for them. They didn’t want to make any rash decisions and end up hurting her more, which I do understand. They just kept telling us, her heart doesn’t follow any of the other VSD’s, ASD’s and PDA’s we have ever seen or dealt with. Bella wouldn’t be here today without her operation, we knew for a long time she needed it, we knew her heart was sick, but nobody wanted to 100% say her heart was the reason. I’m not a doctor or a nurse, but I know my child. We fought for what we thought was right. Bella’s case is now being used as research for CHD. They are also using her case to educate other doctors. Her heart didn’t fall along any of the normal symptoms that a VSD, ASD or PDA has. Until CHD has a cure, until there is more research, until we can find a cause, there will be more cases like Bella’s. Being a voice in their corner is such a big part in fighting this disease.”