By Alyce Collins
THIS TEENAGER’S condition left her with a misshapen face that was initially mistaken for DOWN’S SYNDROME leading to her having FIFTY-FIVE corrective procedures – but she admits people still stare, and NINETY-FIVE PER CENT of them are ADULTS.
Hannah Dunaway (18) from Mississippi, USA, was born with a mass in her head which was caused by the abnormal development of her lymphatic vessels, known as lymphatic malformation which early scans picked up on but doctors first thought it was Down’s Syndrome, however further investigation concluded that it was lymphatic malformation at 18 weeks.
When Hannah was born at 32 weeks in February 2001, multiple specialists were on hand in case she wasn’t breathing when she was born – thankfully she was breathing but it was the largest lymphatic malformation the hospital had witnessed.
At just six days old, Hannah had surgery to remove as much of the malformation as possible, but this gave her only 50 per cent chance of surviving as she was so young. As she improved, at three weeks old surgeons performed a tracheostomy and Hannah was fitted with a feeding tube – which she lived with until she was 12 years old.
Since then, Hannah has had more than fifty procedures and surgeries, including a Coblation tongue reduction surgery, sclerotherapy, radical tumour resections, bleomycin injections, tongue laser removals, draining of lymph fluid, skin grafts and plastic surgery.
Hannah grew up feeling different, but it became more apparent when she was a teenager when the years of missing school for treatments caught up with her and she was of an age where fitting in was becoming increasingly important. Hannah developed a crippling depression in her teenage years from the struggle of living with her condition.
Following years of surgeries and treatments, Hannah’s lymphatic malformation is no longer as severe as it used to be, which has boosted her confidence and now she tries to accept and cherish her uniqueness, rather than be ashamed and hide away.
“My mum found out at her 18-week ultrasound that I had the lymphatic malformation. At her appointment they first told her it was Down’s Syndrome before sending her to a specialist who confirmed it was lymphatic malformation,” said Hannah.
“My mum was hospitalised with preeclampsia on January 31 and I ended up being born on February 2. My baby shower hadn’t even happened because it was arranged for February 3, but everyone’s reaction was pure joy after I was born.
“They didn’t know if I was going to be born breathing or not, so there were several specialists on standby as they weren’t exactly sure what to expect when I was born. I had the largest lymphatic malformation they had seen at that hospital!
“At six days old they removed as much of the malformation as they could, giving me a fifty percent chance of survival. Then at around three weeks old they performed a tracheostomy and I received a feeding tube which I had until I was twelve years old. I was in the neonatal ICU for five months after.
“I received multiple treatments, including Coblation tongue reduction surgery, sclerotherapy, radical tumour resections, bleomycin injections, doxycycline injections, tongue laser removals, Jackson Pratt drains to drain lymph fluid, skin grafts, plastic surgery, countless X-rays, MRIs and CT scans and numerous breathing treatments. I was also hospitalised multiple times a year to receive IV antibiotics and steroid treatment. I’ve had 55 treatments and procedures so far.
“It has made my immune system very weak. I have always got sick very easily and up until recently I was hospitalised multiple times a year from getting sick and causing my tumours to flare. They swell up, bleed and can be extremely painful.
“I had a nine-hour surgery when I was nine to remove as much of my lymphatic malformation from my face as possible. It required over 500 stitches and a skin graft from my stomach to fill in the gap in my face. After that it was definitely much less prominent than before. Unfortunately, it has grown back over the years but it’s nowhere near the size it was before.
“I am currently preparing for jaw surgery to help make my face look more symmetrical and to help with the problems that the malformation caused by deforming my jaw over the years from its aggressive growth. I am also on Sirolimus, a medicine that has significantly helped slow down growth and has helped decrease the amount of pain my malformation causes.”
Although she was born in a hospital in Jackson, Mississippi, Hannah has undergone procedures and had treatments in hospitals in New York, Alabama and Arkansas also because there isn’t one state in particular which specialises in lymphatic malformation to a great extent.
Being born with lymphatic malformation has enabled Hannah to learn first-hand that beauty is much more than just an external appearance. She hopes to encourage people not to feel awkward or nervous about talking to someone with a noticeable difference as she admits that she doesn’t mind people being curious, but when people are rude it becomes hurtful.
“I’ve been aware of my condition from as young as I can remember. I had to stay in the know, trying to understand as much as possible in an age appropriate way so I could cope with what was happening,” she said.
“I was always treated the same as every other child by my family, close friends and teachers. I was fortunate to have the supportive and loving family that I do because despite the hurt so many caused, no one could ever crush my spirit.
“I knew my condition and facial features were not what everyone considered normal, but I never let it stop me from doing what I wanted. I was one of the sassiest and most outspoken little girls you’d have ever met. As I got older, things did start to get rougher for me mentally. I had severe trauma and was diagnosed with PTSD from having to be held down to be put under anaesthesia or have blood drawn.
“I developed depression and anxiety in my early teenage years and still struggle occasionally. I think one of my lowest points was my early teenage years as everyone at that age is so focused on looking good and trying to fit in.
“During my childhood and teen years my lymphatic malformation was much more noticeable, and I had the tracheostomy tube that earned me lots of stares, double takes and very rude comments. The saddest part was that ninety-five per cent of the time it was adults who would act inappropriately over it. Thankfully most of the time other children were just curious so I’d explain it to them, and they’d move along with no issues.
“I am much more confident now than I was a few years ago. I have finally learned to take what negative things people have to say with a grain of salt. Now I try and use my newfound confidence to help others who feel the way I used to. It took me many years to fully understand and embrace that beauty truly comes from within and that my uniqueness is to be cherished and not shamed.
“I always live by the quote, ‘choose kindness’. I want others to learn that you don’t have to be uncomfortable or nervous about talking to a peer with a noticeable difference or disability because we want to get to know you and be treated as equals.”
To see more, visit www.instagram.com/hannahkdunaway