The story of Bella
My name is Dawn and I have 3 children and six grandchildren. My youngest daughter Valerie, at 25 announced her and her husband were expecting. We were thrilled. It was her turn to have her glory. She had a gender reveal, the ultrasound was a girl and showed no signs of problems. Her pregnancy was pretty normal. Delivery ran into problems and had to have a C-section and Bella was born 5 pounds 6 ounces. Soon after the Doctors heard a small heart murmur. She had many other medical issues going on but the heart proved to be the one that was the worst. My daughter came to stay with me so I could help her with the baby. After we went home two or three months went by and Bella just couldn’t keep down her formula and she tired so easily and wouldn’t wake for feeds. When she did wake she would scream because she was hungry. We would wake her up for feeds but she had no energy to finish the bottle or she guzzle it and throw it up after. We spent hours on end taking turns rocking her and trying to feed and burp her. We changed formulas several times. The cardiologist that noticed a heart murmur finally caught at three months that she had a small hole in her heart. What began as a small hole after further testing turned out to be a very large hole between her right and left ventricles of her heart. She also had problems with her endocrine system. She was put on a feeding tube and admitted to the hospital. Little did we know we wouldn’t be leaving the hospital for five months. The Doctors wouldn’t do the surgery on her until she gained weight but she just couldn’t gain weight. It was one set back after another. She got poked and had things shoved down her nose and throat so many times. Yet she still smiled. We prayed over her daily, sang to her, blew bubbles, put videos on for her, she had a team of family loving on her and fighting for her tooth and nail. I wrote down every Dr., nurse, Therapist, and even Janitors name that entered that room. I wrote down every test they did on her and researched it. Finally they said they would do a surgery to temporarily repair her heart. They were going to open her heart and put a band on her artery to slow down the flow of blood. I honestly don’t think they believed she was strong enough to make it through but she proved them wrong. Then she got mysterious infection and they couldn’t do the surgery. The infection was very hard to get past. They put her on so many medications and blood tests and they had to put her on a breathing tube to give her heart a break. They sent a sample of her blood to the Cleveland clinic for testing. Finally when the the fever passed after almost two weeks, they decided to do the first surgery on her. Recovering from this first surgery was the hardest part of her battle. She was on so many different painkillers I just remember so many different bags everywhere. So many different machines and IV lines. She has to be intubated and they couldn’t get her off of it. At one time I counted 17 different bags on the IV lines. My baby Bella fought hard to detox from all the pain killers after surgery. They put her on the worst pain killers when she had the infection before the surgery for some reason. She fought so hard and lay in the bed with only a diaper, needles, tubes and bows in her hair. Then finally she almost ready to go home she started to gain weight and was getting her formula again through the feeding tube.. She was off a majority of the pain killers and the breathing tube. After laying for so long in that hospital bed we were so excited. I was able to put pajamas on her and a random cardiologist came into the room and told us that they needed blood work for her surgery. she was strong enough to do the open heart surgery now. By this time they had teams of doctors from other hospitals consulting on her case. She was thriving now. We were devastated heartbroken. We kicked doctor out of the room. It was probably wrong to do that.I said you have the wrong patient. Her team of Cardiologists came in and apologized for being bluntly told. They said they felt she was so strong now and gaining weight and at a point where it was safe to do the full open heart surgery. The hole was too big to send her home with just a small repair. They wanted to see if her heart could withstand the surgery. The first time they opened her up she didn’t have to be on the heart lung bypass machine. I wanted to take her out of the hospital and take her somewhere else. My daughter in the end after we all consulted and considered, decided to do the surgery. We made sure they had a plan in place because she was off almost all the painkillers. The second surgery went so smoothly by the Grace of God. She was off the breathing tube after surgery almost immediately. We knew what to look for this time. She recovered like a champ. She started taking formula through the feeding tube again and started gaining weight. At 8 months she was still only 8 pounds 4 ounces. She started gaining weight slow and steady. She was able to go home very quickly this time. She went home with only a feeding tube and lots of different medications. This time before we went home they came to us with the news that she had DDX3X de novo. Bella is 17 months now. She has come so far. We are thankful that the doctor’s waited and did the first surgery to alleviate the pressure on her heart. If they would have did the open heart surgery first they would have had to use the heart lung machine and her little body was too weak. It may sound like we didn’t trust the doctors we were just scared and we were advocating for our child / grandchild. We were very good to the doctors and nurses for the 5 months we were in the hospital. We bought dinner for the entire floor and shift at least 2-3 times a week and my cousin owns a bakery so they had cupcakes and sweets for the whole floor twice a week. The entire hospital loved Bella by the time we left. Tomorrow is her appointment at the Cardiac Neuro-Development Center. She is walking, trying to run, talking, saying many, many words. Even says I love you. Sometimes she is a jabber jaws and sometimes a lot of mumbling but she definitely says a lot of words. She can name all five of her cousins, grandma, Papa. She has trouble with balance a lot and walks with a gait. She also just began walking about 4 weeks ago. She is in therapies and we work extremely hard with her at home. I work in the Early Childhood Field with children with Disabilities and Autism. My daughter Valerie has been an AWESOME mother, never leaving Bella’s side and knowing the Medication like the back of her hand. She quit her job and had to stop going to school for the time being to care for Bella full time and she didn’t hesitate to do it. Bella has an IG tube for all her medication and because it was extremely hard to get her to take a bottle again. She is eating great and taking a sippy cup the only things she takes to the it to is her medication so we are hoping she can get that out soon. I am hoping that this story can bring hope to other people who may go through the situation that we went through. When we saw Bella laying with tubes and needles sticking out of every part of her body we were lost and hopeless. But you have to be strong you have to pull yourself together you have to be the best advocate you can be for your child. We were blessed to have a strong support system of family around us to help us. We didn’t give up Bella didn’t give up. The Doctors and Nurses didn’t give up. Most of all We didn’t lose our Faith! I can feel it in my heart she’s going to make a difference for DDX3X. Me and my family will do whatever we can to be advocates for DDX3X.