When you think of October you think of Halloween, pumpkins, trick or treating and maybe even Bonfire Night. However, it is also a time where people celebrate a lot more than just sweets and scary movies.
This month many charities and families across the UK have been celebrating Spina Bifida Awareness Month, an annual event which aims to increase public knowledge about the birth defect.
— Spina Bifida Association (@SpinaBifidaAssn) October 19, 2021
Spina Bifida causes a baby’s spine not to develop properly and as a result can cause severe complications including paralysis, weakened lower limbs, bowel and muscle problems and even underdeveloped learning once the baby is born.
The Baby Centre UK states that around 700 babies a year are diagnosed with open spina bifida and between 5-10% of the population could have closed spina bifida even without knowing it.
The NHS says that the defect is usually found at around 18-20 weeks of a women’s pregnancy and there are many different types of Spina Bifida that can occur, making it appear more common than it seems.
Lana and Andrew are amongst the many parents in the UK who have been celebrating and raising awareness of spina bifida after their youngest child, Hugo, was diagnosed with Spina Bifida Occulta at their 20-week check-up.
They told MNL: “We went for our antenatal 20-week scan like we would any other scan to see how our baby was progressing and, after checking the baby, they focused on one area of his body and the room went silent.
“When they were finished, we got taken into another room by the doctor and that is when we got told the bad news. It was heart-breaking.”
Hugo was diagnosed with one of the most severe cases of spina bifida and the doctors even spoke to the couple about the possibility of a termination due to the extreme care and severity of his condition.
But, despite the complications, Lana continued with the pregnancy and at the end of April this year gave birth to her third child and first baby boy.
Since his birth he has been attending Alder Hey Children’s Hospital in Liverpool for routine check-ups with specialists and in August, he underwent a seven-hour operation to remove the lump on his back caused by his condition.
This is the first of many operations he will face, and Andrew explained how his defect has affected his whole body telling MNL: “As well as spina bifida our son also suffers with other problems including neuropathic bladder and bowel function meaning he has to have a catheter and feeding tube, he has no sensation in his lower legs and feet and has talipes in his right foot.”
These problems are secondary issues caused by his condition and Andrew told us how it was surprising to them how much care he would need on a day-to-day basis and how this affects their whole family.
He said: “Our family have been so supportive and help out with our other children when we are at hospital appointments and so on. However, due to Hugo’s constant care he can’t stay overnight with his grandparents or go on long day trips due to his catheter changes and tube feeding.”
But, Hugo is still a happy baby boy and Lana and Andrew think that sharing their story can help to increase awareness and show support for other families who may be experiencing something similar.
They told us: “As parents of a child with spina bifida we think it’s so important to raise awareness because it can help other families who may be in a similar situation or having to prepare for a similar journey and I think by telling our story it can offer support to them.
“We didn’t even know the full extent of what it would require looking after our baby until we had to learn and adapt to it. We had heard of spina bifida before but not what it can involve as it is not really spoken about and therefore the awareness month is so important to explain it and support people who need it.”
Hugo is continuing to have treatment at Alder Hey as well as receiving home visits to support the family and help develop his speech, language, learning and movement and despite his severe issues who knows what will happen in the future for him.
For more information about Spina Bifida Awareness Month then visit here.
For any support or if you have any queries about Spina Bifida you can also visit the Spina Bifida Association website here.