Charolette’s Story

Charolette’s story starts at just 20 weeks gestation with the anatomy scan. We were referred to MFM specialists for extra ultrasounds due to the fact that I was considered a high-risk pregnancy. The specialist diagnosed Charolette with Common Truncus Arteriosus and referred us to the Fetal Care Center at Children’s Hospital Colorado. The Fetal Care Center repeated the ultrasounds and echocardiograms and ultimately re-diagnosed Charolette with Tetralogy of Fallot w/ Pulmonary Atresia & VSD. They informed us that she would definitely need heart surgery when born.

We made the 9-hour drive once a month to Children’s Hospital in Colorado to have routine ultrasounds and echocardiograms. In July 2024, we temporarily relocated to Denver, staying at the Ronald McDonald House at 34 weeks gestation. After 24 hours of labor, Charolette was born on August 7, 2024, at 39 weeks via cesarean section. We were expecting to see our baby girl go straight to the Cardiac ICU and be placed on oxygen and monitors, but this wasn’t the case. She did not need any interventions right away and looked just like any other baby. We were able to hold Charolette and take some pictures. The team eventually took her off to the Cardiac ICU and began connecting her to all the monitoring devices. They had to start a medicine to keep her PDA (patent ductus arteriosus) open so she wouldn’t lose blood flow to her lungs.

She had several days of gathering data, including labs, X-rays, echocardiograms, and CTAs. Charolette had her first open-heart surgery just nine days after birth. During this procedure, the surgeon placed a central shunt from the aorta to the pulmonary arteries to supply adequate blood flow to her lungs. This first surgery went great, and Charolette seemed to be doing well. Unfortunately, her chest incision would not heal, and she had to wear a wound vac for about two months.

During this time, Charolette developed pneumatosis intestinalis (NEC) and was NPO for 11 days. Once able to eat again, she had a difficult time tolerating her feeds. She had two more episodes of NEC rule-out, during which she couldn’t eat for 72 hours and 48 hours. We tried a combination of different types of formula and breast milk and finally found the right combination. Now, she was on the right track, gaining weight, and hopefully, her wound would heal.

She had to go back to the OR for a wound washout, which meant having her chest cut open for a second time. The washout was just what she needed to progress in her healing. She also had to have surgery for G-tube placement because she started to aspirate her feeds. Two weeks after her washout and a week after her G-tube placement, on October 3, she was finally discharged to stay locally in Denver so she could grow in preparation for her complete repair surgery.

Charolette was enjoying life outside of the hospital, going on walks and meeting family that drove up to visit. She, of course, had routine cardiology and pediatric visits to monitor how well she was doing. Charolette started to show signs of low oxygenation and eventually had to use oxygen at home at night. This was the first sign that something was wrong, and the clinic decided to do further testing. The testing concluded that Charolette would need to be sent to the Cath Lab for a stent to be placed in her LPA (left pulmonary artery). The LPA was very narrowed and could not get adequate blood flow to grow or supply blood to the lungs.

She went in for her stent on November 17 and ended up staying in the CPCU for a week. Once she was doing great, she was discharged in time for Thanksgiving. We were unable to travel, so we spent Thanksgiving at the Ronald McDonald House. Again, Charolette was enjoying life and continuing to have weekly appointments. Her big surgery was scheduled for January 7, and we had testing scheduled for a week before.

Charolette started to have issues with her oxygenation, and her cardiologist decided we shouldn’t wait so long to do the testing. She was scheduled for an urgent CTA. The CTA showed severe narrowing of her LPA and some narrowing of the central shunt. With these results, her complete repair surgery was moved to December 23. This meant Charolette would spend her first Christmas in the Cardiac ICU.

Charolette’s complete repair consisted of central shunt removal, VSD repair, and placement of a pulmonary conduit. This surgery was the longest and most complicated one yet. She did very well with recovery and was discharged on January 1, 2025. We were told that in two weeks, we could finally make our long journey home with our beautiful baby girl.

During one of her weekly check-ups, they found that her LPA was again severely narrowed and needed to be stented open. She was then scheduled with the Cath Lab and received two stents on January 21. After spending another week in the hospital, she was finally discharged to go home to New Mexico on January 29. We traveled home after nearly seven months of living at the Ronald McDonald House and made it home on January 31.

Charolette had a pediatrician visit on February 3, and everything was great. On February 5, we traveled four hours to see her cardiologist for a routine visit and echocardiogram. The new cardiologist entered the room and immediately notified us that Charolette’s echocardiogram showed she had a pseudoaneurysm on her pulmonary artery that could rupture at any time. They immediately notified her team at Children’s Hospital in Denver and prepared us to travel. Children’s Hospital sent a team to transport Charolette and me by air back to Denver.

We arrived at Children’s Hospital on February 5 at 6 p.m. and went straight to the Cardiac ICU, where they began to prepare Charolette for another open-heart surgery. My husband and son made the long seven-hour drive, hoping they would make it before she went in for surgery.

Charolette went in for surgery on February 6 and had to have her pulmonary artery removed and replaced again, as well as have her LPA balloon-stretched and her RPA (right pulmonary artery) reconstructed. Charolette is currently in recovery in the Cardiac ICU and doing great.

Charolette has been on a long and stressful road to overcoming her CHD. We are very grateful to be by her side through it all, but this hasn’t been easy financially. I had to resign from my job of six years, and my husband has used nearly all of his sick and annual leave. We could really use this grant to continue being by Charolette’s side and to help with the increased living expenses and financial burden of being so far from home at this moment.

Sincerely,
The Bevers Family

– Written by Charolette’s mom, Janna