Clare’s daughter, Eliza was diagnosed with 4q Deletion Syndrome. She has several chronic heart conditions, including bicuspid valve and aortic stenosis. She was also born with a cleft palate, and she was diagnosed with Asperger’s Syndrome. Eliza’s health has improved significantly since she had her first major heart surgery at the age of 4.
Clare’s daughter, Eliza is 11 years old. She was born with 4q Deletion Syndrome, which is a genetic condition that has affected her health. She was diagnosed with chronic heart conditions, such as aortic stenosis, bicuspid valve. She had her first major heart surgery at the age of 4, and she is expected to have more surgeries as she gets older. Eliza was also born with glue ear and cleft palate, which has been repaired. She was further diagnosed with Asperger’s Syndrome. However, she goes to a normal school, and Clare feels she is going extremely well there. Eliza sees a heart specialist for her aortic stenosis, and she goes to a speech therapist. She also sees a genetics consultant every once in a while.
When Eliza was 4 or younger, she used to get ill with the flu, which would often develop into a chest infection, causing her major respiratory problems. She often had to be hospitalised and tested for lung infections. On several occasions, she had to go to intensive care for breathing problems. Once, Eliza had a respiratory arrest when she was ill with the flu, and Clare had to resuscitate Eliza while they were waiting for the ambulance.
Because Eliza was so prone to developing respiratory complications from the flu, the hospital provided Clare and her family the possibility of direct admission, so they wouldn’t have to go through a GP when Eliza was sick. Clare found the hospital care excellent. She feels that the hospital became a substitute community, which was a safer place than home. Clare and her family received much support from friends and family, but she feels that being in a hospital is ultimately an isolating experience because the number of people who can visit is limited. Therefore, they were mostly reliant on the support of doctors and nurses.
For this reason, Clare is particularly appreciative of all the healthcare professionals who were involved in her daughter’s care. She feels that they always listened, and they never dismissed her concerns. She thinks that parents are usually the first to notice if their child feels unwell, and she feels that doctors know that too, which is why they always made an effort to involve her in Eliza’s care. However, during their consultations, the flu was never their main concern because Clare feels it was a by-product of Eliza’s more serious underlying conditions. The doctors would usually prescribe Eliza antibiotics to treat her chest infection. Clare feels that they always explained why they thought antibiotics were the best option. For Clare, antibiotics should only be used in the most severe circumstances. She is concerned about resistance because Eliza will continue having major surgeries throughout her life so she will be reliant on antibiotics treatment.
Eliza had her first heart surgery at the age of 4, and her health has improved significantly since. Whenever she becomes ill with cold-like symptoms, she recovers within days. She still gets earaches sometimes, for which she takes antibiotic ear drops. She also gets the flu jab each year, which Clare feels also helped Eliza becoming less sick with serious flu-like illnesses.
Clare’s message to other parents in similar situations is trust you instinct and make a fuss if you need to. She finds that healthcare professionals are incredibly busy, which is why sometimes parents need to be insistent. Similarly, she would like to thank the health professionals she has encountered so far for listening despite being under serious time-constraint and pressure.