You would never know it by Archer Howe’s infectious smile and energy, but this brave four-year-old lives a rare life.
Archer was born with not one, but two very rare genetic conditions (Congenital Central Hypoventilation Syndrome (CCHS) and Hirchsprungs Disease) which combined are known as Haddad’s Syndrome and threaten to cut short his young life every day.
Archer was born at the Sunshine Coast University Hospital but stopped breathing soon after birth and was rushed to the Queensland Children’s Hospital in Brisbane.
“Tom and I didn’t get to hold him at all, and I couldn’t be discharged, so Archer spent his first night without us in intensive care in Brisbane. We were distraught.” Mum Summer recalls.
What followed was almost nine months of their son receiving life-saving treatment in the Paediatric Intensive Care Unit.
While doctors tried to understand the cause of the little boy’s inability to breathe unassisted, it was discovered that he also wasn’t passing any stools and from this, Hirschprung’s Disease was diagnosed. This condition results when nerve cells don’t develop properly along the length of the colon when the foetus is growing.
At the tender age of four days, Archer underwent surgery to remove one third of his bowel, leaving him with a colostomy bag and a lack of sensation for impending bowel motions leading to ongoing accidents.
Summer and Tom made daily trips to see their baby in intensive care and by the time he was four weeks old, Archer’s breathing problems had been diagnosed as CCHS, a condition that affects the autonomic nervous system and most critically, the brain’s ability to regulate breathing.
At this stage, baby Archer had his second major surgery, this time to insert a tracheostomy so he could be connected to a ventilator for life support every time he sleeps. To compound their trauma, genetic testing revealed a mutation that predisposed their son to cardiac issues and cancerous tumours.
“It became clear that Archer would need an extraordinary level of care for survival, so we packed up our home in Noosa, quit our jobs and moved to Brisbane for the next four years.”
The family remained in Brisbane until specific paediatric medical equipment was purchased for the Sunshine Coast, and specialised support workers could be trained to help Archer.
“We were so relieved to get the news just before Christmas last year that we could finally return to the Sunshine Coast, and bring Archer home for the first time.”
Ironically, before going on maternity leave, Summer worked for local radio station 92.7 MIX FM and their Give Me 5 appeal raised vital funds for Wishlist to purchase the $130,000 inter-hospital transfer equipment the Paediatric Critical Care Unit at SCUH needed for Archer to be transferred back to the Coast.
“SCUH is now better equipped to deal with critically ill children, and we were able to access funding so we could get help with caring for Archer,” Summer says.
“We’re so grateful that Wishlist purchased the equipment that meant not just Archer, but other critically ill kids on the Coast could be transported safely when they needed care.”
While the journey ahead will continue to be bumpy for the Howe family, Summer says as first-time parents they don’t know any different and every sleepless night and worry is worth it when Archer’s smile lights up the room.
“The next stage for us is Archer’s heart pauses and that sees many CCHS children requiring support of a pacemaker by the time they're seven, plus the ongoing check-ups for cancerous tumours.
“There’s also the legacy of his young life spent in hospital and the fact he still doesn’t like to be touched when in pain or unwell thanks to his history of constant needle pricks, procedures, IVs, nasal tubes and so on.”
Despite their daily struggles, Summer, Archer and Tom remain positive and fundraise each year with other CCHS families around the globe as they look forward to breakthroughs in technology development that can ease the daily pressure they endure. They are also proud supporters of 92.7 Mix FM’s Give Me 5 appeal.