Jocelyn Freya Myerscough was born at 37 weeks on August 26, 2017 just after midnight. Although her parents, Mary and Steven Myerscough, already knew she was going to have a long journey ahead of her before she was even welcomed into the world. During Mary's 18 week anatomy ultrasound the doctors at Duke Hospital discovered that Jocelyn had significantly complex heart defects.
As the weeks of Mary's pregnancy passed and more information was gathered through fetal echocardiograms, Jocelyn was eventually diagnosed with tricuspid atresia, double-inlet left ventricle, bilateral superior vena cava, hypoplastic aortic arch, and aortic atresia. It became clear that Jocelyn had a "single ventricle heart" and would require a series of three palliative surgeries (Stage 1 Norwood, Stage 2 Glenn, and Stage 3 Fontan) to reconstruct the aortic arch and improve the "plumbing" of her heart. These surgeries would be necessary for Jocelyn's survival and would not be easy. Needless to say, it took a lot of tears and prayers for Mary and Steven to accept Jocelyn's unknown future.
After Jocelyn was born, Mary and Steven had 30 blissful minutes to enjoy their brand new baby girl before she was whisked away to the pediatric cardiac intensive care unit (PCICU). Once there she was placed on oxygen, monitors, and a medication called Prostaglandins, which was critical to her survival until her Stage 1 Norwood surgery was complete. Since Jocelyn was small at birth, only 5 lbs 9 oz, her surgeon determined that her first surgery would be pulmonary bands to limit the excessive blood flow to her lungs until she was big enough for her Stage 1 Norwood surgery. So at 4 days old, Jocelyn had her first open-heart surgery and would forevermore bear the scar of a heart warrior.
Two weeks into recovery from her first surgery, Mary and Steven got the call that Jocelyn's newborn screening came back with devastating news: her test came back positive for cystic fibrosis. Immediately Mary and Steven were overcome with grief at the prospect of what this could mean for Jocelyn... Patients with other significantly life-threatening diagnoses are not candidates for the series of heart surgeries that Jocelyn needed. Would her doctors refuse her surgeries? Would they have to take their baby girl home without surgery for her to pass away peacefully?
Much to all of their surprise, the tests for cystic fibrosis came back normal. This was incredibly baffling to the doctors at Duke since it was confirmed that she had two mutated genes for cystic fibrosis, which for all intents and purposes was enough to diagnose her definitively with CF. In light of the possibility of what this could mean for Jocelyn, Duke referred her case to Children's Hospital of Philadelphia (CHoP) where she was flown to receive her Stage 1 Norwood surgery.
After two months in the PCICU at Duke, Jocelyn and her parents flew to Philadelphia for the next part of their journey. This was an especially trying time for Mary and Steven as they struggled to be strong for Jocelyn while staying in a strange city and a dealing with a new hospital. It was very hard to see their little girl after her Stage 1 Norwood (which is a very intense and long surgery). Her chest was left open and she was on paralytic medications to keep her still, but all Mary and Steven cared about was that their baby girl had made it through the riskiest of the surgeries she would need.
Jocelyn handled her recovery beautifully and made fast progress at CHoP. In fact, after only a month in Philadelphia at three months old Jocelyn was flown back to Duke's PCICU to finish her recovery there. While it felt bittersweet to be leaving CHoP, they were thrilled to be going home to Duke.
However, once she was returned to Duke her doctors noticed that her oxygen saturations were much lower than they should be following her Stage 1 Norwood. Concerned, they took her down to perform a heart cath and to intervene if necessary. They found that her pulmonary arteries were too small for the needed blood flow to the lungs so they attempted to balloon them and Jocelyn did not tolerate the procedure well. Her oxygen saturations dropped significantly, requiring intense interventions. Slowly she started to respond to the interventions and began to show better oxygen saturations. Over the next couple weeks she was weaned off her pain medications and after four months in ICUs Jocelyn was prepared for transfer to Duke's step-down unit: Pediatric Progressive Care Unit (PPCU).
Once in the PPCU, Jocelyn worked very hard on feedings and weaning additional medications. She was not able to feed by mouth, so one more procedure gifted her with a gastric tube placement for future home feedings.
It was a long several weeks with a lot of "back-and-forths" between units, but after 5 months of only knowing hospital life, Jocelyn was finally discharged to go home. It was incredibly emotional for not only Mary and Steven, but also for all the nurses and doctors who saw Jocelyn's progress through it all. As they walked out of the unit together, the nurses and providers even had a bubble and confetti parade to celebrate Jocelyn's first time leaving the hospital.
Jocelyn has been home now for four months and has already required three one-week returns to Duke due to excess vomiting, inability to gain weight, cardiac catherization, and feeding tube replacements. However, children with issues like Jocelyn's are frequent "visitors" of the hospital, so there will likely be many more in the future.
Jocelyn's care requires focus, dedication, organization, and financial stability. Thankfully, Mary and Steven are both teachers, which helps them a lot in managing a child who is as sick as Jocelyn; however, since Jocelyn requires such intensive home care, the Myerscoughs must maintain a one-income household in order to successfully manage her care. This causes extra financial strain on the family.
Jocelyn's medical needs currently include:
-Stay-at-home parent or home health nurse 24/7
-Working parent to miss multiple work days for appointments and health related responsibilities
-15 medications administered several times a day - approximating 1,100 oral syringes monthly
-Weekly physical therapy & feeding therapy
-Weekly appointments to specialists and pediatrician - some distanced an hour away
-At-home oxygen concentrator, oxygen tanks, nasal cannulas, & pulse oximeter
-Feeding pump with bags and feeding supplies
Jocelyn's next steps for care:
Jocelyn's immediate medical goals are to maintain stability and gain weight in preparation for her Stage 2 Glenn surgery. This surgery is scheduled for July 23, 2018 at Duke University Hospital. Her surgeon and cardiologists are confident in her success with the surgery despite her not meeting their weight gain goals. It is impossible to anticipate how long her recovery will be, but Mary and Steven will stay at Ronald McDonald House of Durham during this time until she can come home.
Jocelyn's Stage 3 Fontan surgery will not be scheduled until she is around three years of age.
This gofundme is intended to act as an ongoing support resource to help with Jocelyn's medical needs. Many of her medical needs are not fully (or even partially) covered by insurance and require out-of-pocket payments. The funds raised from this page will go toward Jocelyn's continuous care for immediate and future medical needs. Mary and Steven are truly grateful for any and all support for their little girl. All updates can be found on Jocelyn's Heart Journey Page which is linked below.
Jocelyn's Heart Journey Facebook Page
- Lewis and Joyce Frazier
- Sheryl Sirmons
- Sherry Nelson Griffith
- Lea Macaulay
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