By Martin Ruffell
THIS LITTLE girl was born with an extremely rare genetic condition that causes her skin to grow at TEN TIMES the rate of a regular child – leaving her with scaly skin that strangers mistake for burns.
Lawyer turned stay at home mum Carla Brown (53) from Chicago, USA, was the oldest of eight kids growing up.
Eager to have a large family of her own, Carla and husband Paul (55) had two boys, Brent (28) and Luke (27) by the time they were in their mid-twenties. Falling pregnant with four more kids, Sabrina (21), Ella (16), Logan (14) and Tessa (12), Carla had the large family she had always dreamt of.
Carla and Paul decided to travel to a Ukrainian orphanage to adopt Henry in 2011 and then three more children, Violet (18), Leo (10) and Yana (8) in 2013. However, tragedy struck the family when Henry contracted the superbug MRSA and died in November 2012 aged just two and a half.
In June 2020, Carla discovered a post on Facebook by an adoption agency who were looking for a family to adopt a one-month-old girl with harlequin ichthyosis – an extremely rare genetic condition where a baby is born with thick plates of skin covering the body and face. In severe cases a person’s skin can grow at a rate ten times faster than normal.
Conducting her own research into the unfamiliar condition, Carla presented her case to Paul who agreed that they should go ahead and inquire with the adoption agency.
The very next day the agency responded to their request and asked if they wanted to make Hanna Rose (10 months) part of their family. Carla and Paul agreed and travelled to Atlanta to bring their new daughter home to Chicago.
Within two weeks of returning home, Hanna was rushed to ICU with a bacterial infection due to her condition. With her blood pressure plummeting, her kidneys shutting down and her temperature dropping to just 32.7 degrees Celsius, doctors told Carla and Paul that they didn’t expect Hanna to live past the first 48 hours in hospital. However, after 53 days, Hanna was finally able to return home to her family.
According to Carla, caring for a baby with harlequin ichthyosis is no easy task. Hanna’s thick scaly skin requires two hour-long baths per day as well as the application of prescription creams every three hours both day and night to prevent the skin cracking.
Hanna has deformities in her fingers and toes which occurred as a result of the thick layer of scaly skin stunting their growth in her early life. She is also partially deaf due to the skin in her ears shedding and blocking her ear canals.
When in public, Carla notices strangers staring at Hanna and on one occasion, a waitress asked Carla if Hanna was a burns victim and a friend’s child said that Hanna looked scary, but later admitted that she was the cutest baby ever after getting to know her.
Despite the challenges that Hanna faces and will continue to face in the future, Carla and Paul are determined for Hanna to live as regular a life as possible and will confront each challenge head on.
“A friend of mine told me about a post she has seen on the Facebook page of a Georgia-based adoption agency, saying that they were looking for a family for a one-month-old girl with harlequin ichthyosis,” said Carla.
“I had never heard of the condition so frantically researched everything I could about it.
“I knew it would be a challenge, but if anyone has the experience to cope with cases of severe special needs, it’s us.
“I also saw the amazing people with the condition who had gone to do great things – like Mui Thomas from Hong Kong who became a rugby referee, which I thought was wonderful.
“I rushed to my husband who was just leaving the door at nine-am and said ‘honey, I think we’ve found our girl’.
“We got in touch with the agency and the next day we were asked if we wanted to be her family.
“We travelled to Atlanta where Hanna was being discharged from ICU and took her back to Chicago.
“But within just two weeks, we were back in the ICU for fifty-three days after she contracted a bacterial infection.
“With the mortality rate for children with the condition being fifty percent for children under the age of one, we were so scared that we were going to lose her.
“Her kidneys were shutting down, she was having seizures and her body temperature had dropped to just 32.7 degrees Celsius.
“Doctors later told me that they didn’t give her much of a chance of surviving the first two days in hospital, but she’s a tough little lady and pulled through.
“Caring for Hanna at home is exhausting, as she needs an hour-long bath twice per day and then has to be covered in skin care ointments every three hours day and night to sooth her dry, blistering skin.
“Her skin is so tight that it’s currently difficult for her to roll over.
“Her disability is very obvious, as her skin is bright red and her fingers and toes are slightly deformed.
“I went out to breakfast the other day and the waitress asked, ‘did your baby get burned?’
“I corrected her and let her know that Hanna actually has a rare genetic condition, but these are the types of questions Hanna will get asked herself one day.
“One child of a friend in preschool first meeting her said ‘I am scared of her, she looks scary’, but by the end of the visit said, ‘oh she is such a cute baby’.
“I’ve talked to other mums of children with harlequin ichthyosis and they’ve been at the park and had other children run away or point and that’s obviously going to be a challenge as she gets older.
“But like every other challenge we’ve faced, we’re going to face it head on.”
For Carla and Paul, adopting children with special needs has been the most rewarding aspect of their lives and has even helped their own children to become more compassionate.
“Our job as parents to all of our kids is to look at them and say what does this child need and what can we do to make them feel confident,” said Carla.
“I have a baby who I love being able to share with the world because I feel blessed.
“When we adopted Henry I started a blog which became popular.
“Telling people of our loss was utterly heartbreaking.
“But through that blog, I know of at least a dozen people who adopted children with special needs.
“Some days it still hits you hard. But when you see the good came into the world because of the hard thing you went through, it’s a beautiful thing.
“We choose to focus on the beauty. That’s why she’s our Hanna Rose.”