A whole day passed before Karen Wasson was able to hold her own daughter. The moment the Melbourne woman gave birth via caesarean in 2013, doctors whisked her little girl away for assessment and on to the special care nursery.
“I remember the nurse got me up for a shower the next day, and goes ‘OK, well your baby doesn’t need a feed, so you don’t have to go to her just yet,'” Karen told Mamamia. “I could barely walk but I was like, ‘No, get real. I’m going to see my baby. I’m not just going get back into bed.'”
Little Sophie had been born with a serious heart defect: Transposition of the Great Arteries with Ventricle Septal Defect. This meant the two major arteries supplying blood to her heart formed in an abnormal position, and that there were holes between the two chambers.
It was clear something was wrong as early as Karen’s 13-week scan. When the diagnosis came, Karen said, it was “horrendous”.
“My stomach just dropped… But the sonographer was amazing. He just spoke to us and said, ‘Look, there’s an operation that’s done for this kind of issue and most children do very well after that after that. I was very encouraging, and it made us feel like, OK, it was going to be tough but at least she was going to be okay at the end of it.”
Though Sophie was able to go home with her mother within days, it was four weeks and myriad medications before she would return to hospital for her first open-heart surgery. Once again, the newborn was scooped from her parents' arms and into the care of doctors.
For Karen and her husband, Demos Karkazis, the wait that day was unbearable. Though they'd been called and told the main part of the surgery had finished, an undetected blood disorder prevented the newborn's surgical wounds from clotting, which caused complications for doctors attempting to close her tiny chest.
"I think it's still the worst day of my life. I was at the point of vomiting at that time and I was in tears," Karen said. "By the end of it, when we didn't know where she was and no one could tell us what was going on and it was getting later and later, I was a wreck. An absolute wreck."
Still the nightmare was not over. Sophie underwent her second open heart surgery at 13 months, but not before requiring surgery for a twisted bowel within her first six, plus creation and reversal of a colostomy.
Yet somehow during those months, while consumed with caring for their three children, through panicked ambulance rides and sleepless nights, Karen and Demos found a way to help others.
The two photos here show our daughter Sophie having an Echocardiogram. The first photo was taken after her first open heart surgery 4 years ago. The second was taken a few weeks ago when she was wearing one of our prototypes. Our clothing makes life easier for these amazing kids, even when they aren’t in hospital. #adaptiveclothing #paediatrics #echocardiogram #childrenshospital #wrappedinlove #myheartkid #chdawareness #scarsarebeautiful
A business born from heartache.
It's called Cocooned. A range of soft, organic cotton clothing for babies and young children in hospital care. Developed in consultation with paediatric medical staff and patients, the outfits can be changed without the need to disconnect lines and monitoring equipment.
Through their experience the couple was surprised to learn that, in Australia at least, no such thing existed for full-term babies.
"We spent a lot of time just trying to wrangle Sophie in and out of clothing," Karen said. "We'd just get her dressed in something and then someone would come round or a nurse would have to do checks and we'd just have to take everything off again. I just thought, 'This is ridiculous. Why isn't there some clothing that makes easier?'"
Despite having no background in manufacturing or apparel (both work in film and television production), they decided to make it happen.
"There was a lot of chopping up little onesies [for prototypes] and sewing them back together again. And I can't sew to save my life, so there's a lot of very crude looking outfits from that stage," Karen said.
Their entire savings have since gone into the venture, and there were several moments when it seemed like they couldn't make it happen. But they did, and Cocooned officially launched in February.
"We were very encouraged by a lot of people and especially within the heart kids support groups who have been there and experienced it and know how useful it is," Karen said. "They were sort of helping with moral support and making sure that this is something that's needed and that we should keep going."
Like the products, the name was born from their own experience.
“I think when we were going through all of this we had a lot of people, friends and family, wanting to help, and as well-meaning as they were we sort of felt like they couldn't understand," Karen said. "We just sort of wanted to grab all of us, my husband and the kids, and we just wanted to wrap ourselves up. It was just it was this feeling of wanting to be safe," Karen said through tears. "So that's kind of what that word brings up for us, you know, just being wrapped and loved and safe and protected."
Sophie is now four years old, chubby, cheeky.
"I call her the devil," Karen said, laughing.
“Oh my gosh, she is wicked. She is a troublemaker. She's the feistiest little thing that you've ever met. But she she definitely loves life and lives it to the fullest."
As for her health, she was due for yet another operation earlier this year. Yet when the family visited the cardiologist in January, it was good news - no surgery, not for now.
“I actually was in tears in the foyer of the hospital after that appointment," Karen said. "I think they were the first happy tears I might have cried in that hospital.”