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Support Charolette's Heart Health Journey

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Requesting assistance for the Bevers family. The Bevers family went from a 2 income household to a 1 income household due to the needs of their new daughter Charolette. They were able to save up some prior to her birth but have since exhausted those funds and continue to have medical needs and expenses for Charolette. Such as traveling back and forth to appointments locally, to Albuquerque, NM, and to Denver, CO over several days span. Not to mention the normal expenses that come along with a baby and money lost with time away from work. Please see below to learn more about Charolette and her journey thus far.

Charolette’s story starts at just 20 weeks gestation with the anatomy scan.The family was referred to MFM specialists for extra ultrasound due to the fact that she was considered a high-risk pregnancy. The specialist diagnosed Charolette with Common Truncus Arteriosus and referred them 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 & MAPCAs. They informed them that she would definitely need heart surgery when born. They made the 9-hour drive once a month to Children’s Hospital in Colorado to have routine ultrasounds and echocardiograms. In July 2024 they temporarily relocated to Denver staying at the Ronald McDonald House at 34 weeks' gestation. After 24 hours of labor, Charolette was born August 7th, 2024, at 39 weeks via caesarean section. They were expecting to see thier baby girl go straight to 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. They 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, like labs, x-rays, echocardiogram, and CTA. Charolette had her first open heart surgery just 9 days after birth(8/16/24). 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 2 months. During this time Charolette developed pneumatosis intestinalis (NEC) and was NPO (nothing by mouth) for 11days. Once able to eat again she had a difficult time tolerating her feeds. She had two more episodes of NEC rule out where she couldn’t eat for 72hrs and 48hrs. They tried a combination of different types of formula and breastmilk 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(9/20/24), which meant having her chest cut open for a second time. The washout was just what she needed to progress her healing. She also had to have surgery for g-tube placement (9/27/24) because she started to aspirate her feeds. Two weeks after her washout and a week after her g-tube placement, on October 3rd, she was finally discharged to stay locally in Denver, so she could grow in preparation for her complete repair surgeries to come. Charolette was enjoying life on the 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 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 November 13th 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 7th, 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 Dec. 23rd. This meant Charolette would spend her first Christmas in the Cardiac ICU. Charolette’s complete repair consisted of Central Shunt removal, VSD repair, and a Pulmonary conduit placed. This surgery was the longest and most complicated one yet. She did very well with recovery and was discharged on January 1st, 2025. They were told that in two weeks they could finally make our long journey home to Alamogordo, New Mexico with thier 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 21st. After spending another week in the hospital, she was finally discharged to go home to New Mexico on January 29th. We traveled home after nearly 7 months of living at the Ronald McDonald House and made it home on January 31st. Charolette had a pediatrician visit on Feb 3rd and everything was great. On Feb. 5th we traveled four hours to Albuquerque, NM to see her cardiologist for a routine visit and echocardiogram. The new cardiologist entered the room and immediately notified them that Charolette’s echocardiogram showed that 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 them to travel. Children’s hospital sent a team to transport Charolette & Janna (mom) by air back to Denver. They arrived at Children’s Hospital Feb. 5th 6pm and went right to the Cardiac ICU where they began to prepare Charolette for another open-heart surgery. Charolette’s dad and brother made the long 7-hour drive in hopes that they would make it before she went in for surgery. Charolette went in for surgery on Feb. 6th 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 was discharged on 3/5/25 to stay locally in Denver. Charolette had a follow up at Children’s Hospital a week after discharge and was released to go back home to New Mexico. They followed up with her Cardiologist in Abq 3/11/25 and everything was good. They continue to she her cardiologist in Abq once a month as well as a GI doctor and dietician. Charolette also attends physical therapy, developmental therapy, and speech therapy twice a month. We only see her pediatrician as needed or for well visits. They are also scheduled to go to Denver every 6 months for continued monitoring by her cardiac team. Through her short life she has had several surgeries and extended stays in the hospital and will expect to have a few more cardiac surgeries and cath procedures through her life as she grows assume there are no further complications along the way. She currently takes multiple medications to manage her condition, is fed via a g tube (tube tat comes through stomach), and requires oxygen use at night. Most recently (6/24/25) they went in Denver for ENT follow up, a swallow study, and to check in with her pulmonary hypertension cardiology team and are hoping for great news!
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    Co-organizers (4)

    Jaylynn Nunn
    Organizer
    Alamogordo, NM
    Janna Bevers
    Co-organizer
    Jennasie Webb
    Co-organizer
    Jennifer Woods
    Co-organizer

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