A Child Transformed
The story of 14 year old Pia as told by her mother while here in NYC for Pia's surgery
Pia is the middle child in our family: her older brother, Jack, is 15, her younger brother Harry, is 8 and her 31-year-old half sister, Hollie lives in London. Pia had a younger sister, Lucy, but seven years ago, she died suddenly of a rare virus. This was incredibly hard on Pia since she and Lucy were very close.
Pia was born in South Africa, where her dad and I had moved during my pregnancy. Her dad, Hal, was South African but had lived in the UK. He returned to South Africa because we wanted to see what living there was like after the regime changed and the country adopted a democratic government. We only intended to be there for one year - but here we still are after 14 years. Once you've been to South Africa you'll know why people come for a visit and never leave!
As soon as Pia was born, it was obvious that there was something wrong with her. She didn't look 'quite right' and she was struggling to breath. At three days old, she was diagnosed with Crouzon Syndrome and underwent her first surgery; she spent the next month in the hospital. Since then she has had 18 surgeries on her head and face. Many of the procedures occurred at Great Ormond Street Children's Hospital in the UK. South Africa has very few cases of Crouzon Syndrome, so we always struggled to find the right doctors.
At the beginning of 2004, Pia's dad died of cancer. As you can imagine, it was an enormous blow to our family. Shortly afterwards, I realized that Pia could no longer be treated at Great Ormond Street under the National Health Service. At this point of desperation, I found out about the Dr. McCarthy, the Institute of Reconstructive Plastic Surgery, and the National Foundation for Facial Reconstruction. While in New York in July 2004, I met Dr. McCarthy and he agreed to take Pia on as a patient. It is only because of the generosity of Dr. McCarthy and his team at NYU and the work of the NFFR in paying costs that we are able to be here now having what is, for Pia, life changing surgery.
Through her life, Pia has been stared at, pointed at, and laughed at. Additionally, Pia has struggled physically. Pia was diagnosed with hydrocephalus at four months old and had a shunt inserted to relieve pressure in her brain. In 1998, the shunt became blocked, causing pressure on her optic nerve and irreversible damage to the eyes. Now, Pia is partially sighted. One of the benefits of this surgery is that Pia's eyes will be better protected - her eyelids didn't close before. Also, she will be able to wear glasses and sunglasses for the first time!
This surgery has also improved Pia's breathing and, therefore, her sleep. Over the years, Pia's airway has become obstructed and she developed sleep apnea. Even with the doors closed, you could hear her snoring several rooms away, so Pia hadn't gone to a sleepover for years. But her breathing affected more than just her social life. Because the quality of her sleep was poor, Pia had difficulty concentrating at school and sometimes fell asleep in class. But things have changed. This weekend, Pia went away with friends and slept soundly. And, when she first came home after the surgery, I often went into her bedroom to check that she was still breathing - I couldn't hear her anymore!
Already, I see such a transformation in Pia. For me, it is incredible to see her breathing through her nose for the first time and to hear a free flow of air in and out. Recently, Pia has been feeling her new face, and she became quite concerned that her eyes were 'in hollows'. I had to let her feel my face to show her that we all have eyes in hollows! And for the first time, she has cheekbones. Seeing her face move has been an incredible process.