Lydia
Gold Coast Marathon 2021
Lydia and her husband, James, together with their 3-year-old-son Hamish were excited to learn they were pregnant and were eagerly awaiting the arrival of their new addition.
During Lydia’s pregnancy, at her 19-week scan, they received the news that there was a problem. Her unborn son, Freddie, was diagnosed with Congenital Diaphragmatic Hernia (CDH).
“Freddie’s CDH wasn’t considered severe based on the MRI,” recalls Lydia, “he seemed a moderate case.”
In December 2020, Freddie was born and had an operation to repair his hernia when he was 5 days old. The repair went well. Lydia and her family were grateful to the team of medical professionals and surgeons who cared for Freddie as he recovered.
“Freddie kicked so many goals. At 3 weeks old he successfully moved to high flow oxygen. He even learned to breastfeed on high flow which stunned the doctors and terrified nurses!” says Lydia. “At 5 weeks old he smiled for the first time. He passed his developmental tests and spent some time on low flow oxygen. We were so proud of our smiley boy.”
Freddie remained in hospital, and as he stabilised and improved, he put on weight. “We were told the only way for lungs to grow was for the body to grow. The more weight he put on the better, and boy did he get chunky!” says Lydia.
As Freddie neared 12 weeks of age, his condition changed. He began to struggle, and the medical team were unable to determine the cause without invasive testing.
“We were unable to tell if it was a respiratory issue, or reflux, or even just normal baby fussing,” says Lydia.
From 12 weeks on, Lydia and James experienced very tough and challenging times. Freddie underwent many tests and had a very long stay in the Paediatric Intensive Care Unit.
“There was a lot of uncertainty regarding his prognosis, and a lot of irritability on poor Freddie’s part,” says Lydia.
Freddie’s condition deteriorated and eventually he had to be reintubated. The doctors took this opportunity to do a CT scan which showed that Freddie’s lungs, although sizeable on an x-ray, were severely underdeveloped in terms of alveoli. Freddie’s right lung was non-functional, and his left lung was quite damaged too.
“Freddie’s doctor said he had defied scientific expectations to make it this far,” says Lydia. “Just a week prior to his deterioration he had passed his developmental test with flying colours. We were so incredibly proud of him. But in the end, after trying so hard for four-and-a-half months, Freddie just couldn’t keep going, and devastatingly he passed away peacefully in our arms on the 8th of May 2021.”
Lydia, James and Hamish held a beautiful memorial service for Freddie with a sunflower theme to honour their brave CDH angel.
Wanting to draw attention to her son’s courageous battle with this rare birth condition, Lydia decided to run in the Gold Coast marathon in Freddie’s memory.
“I wanted to fundraise for CDH Australia so I could make a meaningful contribution towards research and support for families affected by CDH,” says Lydia. “Hopefully one day a cause for this brutal birth condition is found so it can be prevented. No baby or family should have to suffer through what Freddie and our family did.”
Lydia began training for the event which was due to take place at the beginning of July. She created an online fundraising page and shared the link with her friends and family.
“I was blown away by how many family and friends donated. I raised almost $2000 very quickly. CDH Australia sent me a free hat and singlet in the post so I could raise awareness while I ran. I was so happy that the funds would be helpful.”
At the end of June, the organisers had to change the event to a virtual run due to COVID restrictions.
“I was anxious that the fundraising money might not be sent to CDH Australia because of the event change. I was so happy to hear that the funds would not be affected,” says Lydia.
On the 10th of July, Lydia completed the virtual half marathon.
“I’m so grateful for everyone’s donations. I’m so glad it will be helpful to CDH Australia. These funds will be Freddie’s legacy,” says Lydia.
“We miss him beyond words, but he lives on in our hearts and minds every minute of every day. We are determined to live our lives in a way that honour his strength and bravery. He taught us so much and has enriched our lives beyond measure.”
Lydia raised an amazing $4,697.25 in Freddie’s memory to support the CDH community.
Would you like to become a CDH Superstar?
Join an event and sign up to fundraise. CDH Superstars receive free merchandise to raise CDH awareness at the event. Visit our events calendar to find out more.
