Main fundraiser photo

Baby Ben's Severe Congenital Heart Disease


Hi friends and family. I want to take a moment to tell you about our sweet Ben. Ben is our miracle baby with congenital heart disease. In his 3 and a half months of life, he has had three surgeries, three cath labs, two blood clots, and one experience on ECMO. He is a strong heart warrior. He has been through more trials in his few months of life than most go through in a lifetime and we are just beginning his heart journey. He will need several more heart surgeries to treat his condition. People often ask us how they can help. These experiences are quite stressful financially. We would greatly appreciate your assistance to help us cover the ever-mounting stack of medical bills.

 

This is Ben’s Story. Brett and I have desperately wanted children. After nearly 8 years of trying, multiple failed fertility treatments and medical programs, we started to believe having children was not in the cards for us. On Christmas day 2018, we were surprised to find out we were pregnant. It was one of the best days of our lives. At our 20-week anatomy ultra sound, we were told something was wrong with Ben’s heart. We were referred to Primary Children’s hospital to get a fetal echocardiogram. After the scan was completed, the cardiologist came into the room and told us on a scale of minor to quite severe heart conditions, Ben’s heart was quite severe. We were devasted and didn’t know what this meant. How could we have waited so long for our miracle just to learn he would have to face something so critical? We learned Ben has a pulmonary stenosis, a double outlet right ventricle, transposition of great arteries, an AV cancel defect, a left superior vena cava, and a smaller fifth chamber behind his left atrium. He was also diagnosed with Heterotaxy, a mis-arrangement of organs.

 

Ben was born on August 26, 2019. He is absolutely amazing. He stayed in the hospital 2 weeks after he was born. During that time, he had a cath lab procedure to balloon his pulmonary artery and he was placed on the single ventricle high risk team, which means he would be monitored closer than other heart patients.  At home, we started to experience frequent oxygen desaturation episodes and severe acid reflux. On September 22nd, we were re-admitted to Primary Children’s hospital because Ben’s acid reflux was so severe, he choked and stopped breathing. The ambulance came and took us to the hospital where we would stay for the next 7 weeks. We experienced multiple scares that no parent should ever have to go through. They told us he would need a heart surgery to place a BT shunt and a Nissen surgery to repair a hiatal hernia and his severe acid reflux. On October 3rd, Ben had his first surgery to place the BT shunt. Two days later, a blood clot filled his shunt, blocking his pulmonary blood flow and causing his oxygen saturations to drop. Luckily, the hospital caught in in time and were able to clear the clot with medication and an emergency cath lab procedure. After heart surgery, he faced multiple complications including fluid on the heart and lungs, tachycardia and tachypnea.  On October 22nd, Ben had his Nissen. This was the worst and scariest day of our lives. What was supposed to be a simple, less invasive laparoscopic surgery, turned out to be one of the most awful outcomes. About half way through the procedure, we received a call for the chief of general surgery at the hospital. Ben’s lung sac was nicked which caused a pneumothorax and then caused his BT shunt to clot off again. It’s extremely rare to clot a shunt and to have it happen twice is unheard of, yet it happened to Ben. Ben’s vitals rapidly dropped on the operating room table. In order to save his life, they put him on ECMO, an extracorporeal membrane oxygenation machine. This machine acts as life support by taking over the function of the heart and lungs when they are not able to sustain life. Once he was on ECMO, Ben was brought to the cath lab, where a stainless steel mesh stent was placed in his heart to allow more stable pulmonary blood flow. While this was happening, Brett and I sat in a small consultation room. We were there for the longest 6 hours of our lives. Every 30 minutes or so doctors came in to update us. We were told the next 12 hours were critical and there was a high probability our son could die. Luckily that was not the case and he and came off of ECMO the next morning. Two days later, he was brought back into surgery to finish the Nissen, which was a success. Two weeks later, we were able to bring him home again.

As Ben grows, his stent does not grow with him, which limits his pulmonary blood flow. We are starting to experience more desaturation episodes which brings us closer to his next heart surgery. They are anticipating he will have a surgery called the Glenn in the winter of 2020. This will provide a stable pulmonary blood flow that we hope will last him a few years. Ben will continue to meet with cardiologists who will then determine the next steps in his care. The road is long and we do not yet know its outcome. We pray everyday that the Lord will bless our sweet Ben and give him the best possible outcome with his heart.

Organizer

Julie Lafferre
Organizer
Saratoga Springs, UT

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.