A mum who noticed her baby boy bruised easily has revealed the incredibly rare condition that changed her family’s life.
Rosie Woods, 37, says Louie was six months old when she realised he was getting marks on his body from everyday activities such as using a baby bath seat or sitting in a swing at the park.
Even leaning on hard materials, like the metal or plastic of a shopping trolley, would leave him black and blue.
But it wasn’t until a GP referred Louie to a paediatrician at their local hospital that Rosie and husband Matt, 42, got answers.
“Louie had a series of blood tests a few weeks later and we were told he had severe haemophilia,” Rosie, a marketing consultant from Isle of Wight, told Need To Know.
“We were completely heartbroken by his diagnosis.
“We feared for his future and what it meant for him moving forward in terms of leading a normal life and having a normal childhood.
“As well as his health, the thought of my child being in pain absolutely broke my heart.
“Most cases of this condition have a family history, but as ours does not, it was quite a shocking time for us.”
Haemophilia is rare condition that affects the way a person’s blood clots, meaning they bleed more easily than others.
Rosie and Matt, an engineer, were told Louie had the most severe form of the condition possible.
The mum said: “We were told at this point that he would need medication every other day through a port-a-cath that would need to be placed in his chest.
“We were also told he was at risk of internal bleeding spontaneously so he could begin to bleed in any part of his body.
“Luckily, while we were on the waiting list for Louie’s port surgery, a new medication was licensed by the NHS which was a subcutaneous style injection.
“It was needed just once every two weeks.
“It really was a complete and utter game changer for us all.
“I was so worried about the psychological impact on him, as well as huge health worries.
“But he is in his second year of school now and is thriving.
“He plays with all his friends and does almost everything a normal six year old does.”
But Rosie says one thing that has taken some getting used to is injecting her child.
She said: “Injecting a child is never easy.
“And I do suffer from a lot of anxiety around keeping him safe as he is still at risk of internal and external bleeding.
“We have to keep a closer eye on him than we would with another child.
“His big brother is incredibly good with him and helps us to keep him safe.“
And if anything, Rosie believes it has brought their family together.
She said: “It is something that has to be a group effort.
“Keeping Louie safe and giving him the childhood he deserves always has been – and always will be – our main goal.
“Giving him his regular injections can be difficult and is something we have to overcome together.”
Rosie says everything has “calmed down” for the family now, but the scare of something going wrong is still there.
She added: “The truth is this is a lifelong, non-curable condition which can have incredibly serious consequences.
“So this will never go away for us, it is something we have to live with and is just simply part of our lives now.
“My advice to other parents going through this is to ask questions about the condition and treatment options available as they differ greatly.
“Also, take each day as it comes.
“Diagnosis is a difficult time, but you will come through this and learn to live with the condition as a family.
“If you think your child is having a bleed always get it checked and have a professional make the decision.”
