Don’t give up! Mother of baby born with rare disability tells how she had felt like a failure
Baby Lua was diagnosed with almost unique form of Noonan syndrome
20 September, 2018 — By Tom Foot
Rina Teslica with baby Lua
THE mother of a baby born with a rare genetic disability has spoken frankly about how she overcame feelings of failure and selfishness to learn to love little Lua the way she is.
Rina Teslica, who lives in Kentish Town, said she wanted to help new parents not be “overwhelmed” or “give up”.
Lua was expected to be healthy but struggled to breathe when she was born and did not go home with her parents for nine months while experts kept her under 24-hour observation.
Ms Teslica, 28, said: “I want to tell parents to not give up. To not be overwhelmed. And to know it gets better from where they are now.”
Lua was diagnosed with almost unique form of Noonan syndrome that had not been picked up by scans, and the parents – both young and healthy with no family history of genetic disorders – had no idea about it before she was born. After several months of genetic tests consultants have concluded a “random mutation” occurred during pregnancy.
Ms Teslica said: “If we had known I would definitely have been thinking why would I bring a child into the world that will be in pain? That will have countless surgery, and be tied up to ventilators all the time. No one wants to see their baby crying and in pain all the time. It made me feel selfish.”
Lua did go home but this was also a difficult time as she required special suctioning machines to clear her airways – often every five or 10 minutes. Without the support of nurses and the hospital this was a difficult transition for the new parents.
Ms Teslica, who was working in Harvey Nichols and in the fashion world before she got pregnant, said: “It was so hard but at the time, I did not realise that she would develop so much. She is her own little person. She is mentally behind other two-year-olds, and she looks and acts like a baby. But she speaks now – she calls her daddy ‘bubba’. She makes up words. We could have lost her very easily during that nine months in hospital, but she was so extremely strong. Kudos for her.”
Noonan syndrome causes children to develop distinctive facial features including a broad forehead, drooping eyelids and a wider-than-usual distance between the eyes. Lua developed unusual symptoms as she has a variation of the syndrome that only a handful of other children in the world had been born with, her mother said.
In many cases, the NHS says, a faulty gene is inherited from one of the child’s parents. Despite this it is often missed during pregnancy as the parents may not have obvious features of the condition themselves. But Ms Teslica said consultants have been left scratching their heads after blood tests showed no traces of
any disorders on both sides of her family.
She said: “Lua is an enigma. It was a random mutation that happened while I was pregnant – it happens. That is how it has been explained to me.”
Mr Teslica said she had been helped by Genetic Disorders UK, which is this week promoting “Jeans for Genes Day” on Saturday where people wear denim for charity.
Funds raised go towards providing grants to organisations for projects that aim to transform the lives of children with genetic disorders.
l For more details go to the website www.jeansforgenesday.org/