World Heart Month – Expert teams help with Jory’s Journey
TW: MENTIONS OF MISCARRIAGE
It’s World Heart Month throughout February and we’re sharing stories from patients and families who have been cared for and supported by our expert teams.
Jawaher, also affectionately known as Jory, has had many ‘firsts’ during her first year of life. She celebrated her first birthday and Eid in our Children’s Hospital with her parents Khalda and Bashir, who have shared their family’s story.
She is currently being cared for on Ward 12, one of our specialist Cardiac wards, after being born with multiple forms of congenital heart disease, as well as other health complications with her intestines.
Jory has a heart condition called Pulmonary Atresia, Ventricular Septal Defect (VSD) and Major Aortopulmonary Collateral Arteries (MAPCAs).
Congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works. The term "congenital" means the condition is present from birth.
Congenital heart disease is one of the most common types of birth defect, affecting almost one in 100 babies born in the UK.
She was born premature after being referred to our specialists due to reduced movement. The family’s “warrior” was born and then transferred to our Women’s Hospital and then rushed to our Children’s Hospital to our specialist team last January.
Jory is the family’s “Rainbow Baby” and was born after her family had experienced the heartbreak of pregnancy loss over a 14-year period.
Mum, Khalda, recalled her journey. She said: “When she was born, we did not know what was going on. The doctors explained things but it was difficult to fully understand.
“At one point, we thought we had lost her because of her medical conditions.
“We say Dua and pray every day for her. Every day we put the Quran on using the cube the Chaplaincy team gave us so she can listen to it every day.
“When she was really sick, it was a very challenging time because whilst we were in the Paediatric Intensive Care Unit (PICU), Jory’s grandmother on her father’s side sadly passed away. My husband had to be there for Jery, so couldn’t go to his own mother’s funeral.
“We are so grateful for our daughter. We named her after her Grandma.”
“We have waited 14 years for her. We are so, so proud of her as she has given us the pleasure of getting to be parents. Something we have waited for so long to be able to do.”
Jory’s parents expressed how grateful they are to our medical teams that have been by their side throughout their daughter’s life.
She said: “I appreciate the doctors, nurses and all of the staff that have helped us. They are so lovely. They supported me many, many times. When I was down – myself and her dad.
“I appreciate the support they offered us as a family as it us through some really difficult times.”
Dr Mike Harris, Consultant Paediatric Cardiologist, is part of the team that has cared for Jory (Jawaher).
He said: “Jawaher is now just over a year old. When she was born, she was premature and small. It became clear quite early on that she had several differences, which included a significant congenital heart problem but also a problem with her intestines.
“Her prognosis at first was very uncertain at her weight and prematurity, given the significant other problems that she had.
“She had a very difficult time recovering from her surgery due to a number of factors and it has been very slow progress for her up to this point. However, she has defied the expectations of many people.”
Khalda, mum, said “It took a long time for her to recover from heart surgery and she was in a very critical position but she is such a good fighter and survived.”
The heart is divided into four main sections called chambers. Congenital heart disease can occur if any of these chambers or valves don’t develop properly while a baby is in the womb.
Dr Harris said: “She continues to face challenges and difficulties, but we have learned that she just likes to take her time about things and so her parents and I have learnt to become very patient with her.”
“Her Mom and Dad have been by her side throughout the whole journey and have been absolutely dedicated to her. They have been through some very difficult experiences and I, and the rest of the team, are full of admiration for how they have coped with all of this and for their loving care for their precious daughter.”
Jory continues to be cared for as an inpatient at our Children’s Hospital but is getting closer each day to be in a position where she can go home. When that happens, our expert teams will remain by her side as she grows older.