The mother of a toddler with quadriplegic cerebral palsy says her “life is on hold” as she has had to give up her education and rely on donations to pay for her son’s physiotherapy.
Marta Andreeva’s son Ben suffered brain damage after he was delivered by an emergency caesarean section at Ninewells Hospital in Dundee in August 2019.
Now almost three years old, Ben has quadriplegic cerebral palsy, meaning all four of his limbs are affected.
He can’t walk, has little or no control of his arms and legs and is also blind.
Marta, who lives in Stobswell, is still waiting to see how else the condition could affect him as he gets older.
She has had to give up her civil engineering studies at Dundee University to take care of her son.
Emergency surgery
Marta, 38, originally from Bulgaria, said despite having a normal pregnancy things took a turn for the worse when complications were discovered just a week before her due date.
The umbilical cord was wrapped twice around Ben’s neck while he was still in the womb and doctors decided to carry out an emergency C-section.
Marta disagrees with decisions that were made during the birth and complained to NHS Tayside.
A complaint has also been made to the Scottish Public Services Ombudsman to be investigated.
‘Overwhelmed’
When Ben was only a few months old Marta began to notice him struggling with simple movements.
Ben was given some physiotherapy and occupational therapy on the NHS but Marta said they were not given enough sessions and the therapy wasn’t suited to his complex needs.
Due to coronavirus, Marta says she struggled to get an official diagnosis on Ben’s condition.
Marta said: “Although the exercises can help in children with less serious conditions, I felt that with Ben they just weren’t working.
“I was concerned that I wasn’t doing enough to help Ben.
“I was feeling overwhelmed by the birth and not knowing what is going on with my baby.
“I didn’t agree with the NHS physiotherapist when I was told that parents are the best therapists.
“I felt that someone needed to come and help me with the exercises. I felt overwhelmed with the responsibility.”
Marta looked into private treatments but couldn’t find anything nearby suitable for such a young baby.
She took her young son back to Bulgaria where she was told he has quadraplegic cerebral palsy, which was later confirmed by doctors in Dundee.
Bulgarian doctors advised Marta that Ben would need daily physiotherapy and there are centres in Germany and America which could help, but she could not afford the treatment.
Desperate for help, Marta set up an online crowdfunder and raised £25,000.
Thanks to the fundraising she was able on several occasions to take Ben for physiotherapy in a centre in Slovakia.
She also found a private therapist in Edinburgh who treats Ben regularly. However, the treatments he has received so far have used up all of the money raised.
Marta has been working as a delivery driver at evenings and weekends but says she does not earn enough to cover the cost of therapy.
She believes the treatment is stopping Ben’s quadriplegic cerebral palsy from getting worse but says doctors here have told her physiotherapy will not help her son.
Marta said: “The struggle is I can see Ben will need his whole life therapy.
“I don’t want him to end up with different problems.”
She added: “The system here are trying to convince me that he’ll be like this all his life and I feel like they are saying there is no point of much therapy.
“But I want to fight for his wellbeing and I hope that one day I will see results.
“He is a happy little boy but he can do so little and his life is so limited.”
‘I’m exhausted all the time’
“My life is also on hold and I feel exhausted and overwhelmed all the time.
“I want to do the very best I can for Ben but I really worry that things aren’t going to get better.
“I just want a better future for him.
“I am feeling overwhelmed at not getting help and I also want to to point out how difficult life is for mums with disabled children.
“Unfortunately many of us need to rely on charity and help from family and friends.”
A spokesperson for NHS Tayside said someone from the physiotherapy team will be in touch with Marta to discuss her concerns.
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