‘You feel like you’ve got to wrap her up in cotton wool’ - Mother speaks of agonising wait for albinism diagnosis for her 19-month-old daughter
PUBLISHED: 14:07 30 November 2017 | UPDATED: 14:07 30 November 2017
Born with very pale skin and a mass of white blonde hair, little Harper Lacey is striking.
But the bubbly toddler, who loves nothing more than watching Disney’s Moana and is obsessed with chickens, has had a difficult first 19 months in life, after she was diagnosed with albinism.
Now her mother, Rebecca Lacey, wants to highlight the condition and the importance of recognising it early - something she said did not happen in her daughter’s case.
“When Harper was born, we asked if she could have albinism, and were told she could have but nothing else was done - so without concern from the hospital, we came home,” said 26-year-old Miss Lacey.
“But when she was about eight weeks old we noticed there was a problem with her eyes, they would move involuntary, very fast.”
Miss Lacey - who lives in Glenn Road, Poringland with partner Ryan Kemp, a welder, and elder daughter seven-year-old Alicia - was concerned and told her health visitor, who referred her to a specialist.
But it was an agonising eight-month wait until they saw a opthamologist at the Norfolk and Norwich University Hospital (NNUH), where it was confirmed Harper did have albinism.
“Life for Harper hasn’t been easy since,” said Miss Lacey, a former support worker. “We asked how could no-one could have picked this up sooner.”
Harper will always have vision problems and potentially other health conditions. But Miss Lacey was concerned at the lack of support she felt she had received, and said she had found more help on social media.
“I do feel like the doctors should be giving us that information,” she said.
“The big guilt we put on ourselves as parents is we did not know so she was exposed to the sun - obviously she was still protected - but she spent 15 months in the sunlight which we didn’t know could affect her.”
Since January, Harper has been having seizures, which Miss Lacey said she thought was due to a lack of vitamin D - something those with albinism suffer with. And since giving her daughter vitamin D supplements, these had improved.
“I just feel we should have known sooner, and that staff should know how to recognise these rare conditions.
“You feel like you’ve got to wrap her up in cotton wool, and you just want her to be a normal child.”
A spokesman for the Norfolk and Norwich University Hospital said: “Unfortunately, we are unable to comment on the treatment received by individual patients.
“There is a national standard which aims to examine all newborn babies within 72 hours of birth.
“This newborn physical examination is most often carried out in hospital prior to discharge following birth.
“This is undertaken by paediatric doctors, nurse specialists or midwifery staff trained to carry out the examination.”
They said there was then another examination at eight weeks of age, carried out by GPs, to confirm the findings of the earlier one and to look for any other abnormalities not picked up before.
They added: “Albinism is a rare condition and on average we would expect to see perhaps one case every three years in a maternity unit the size of the NNUH department.”