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First birthday joy for girl born with half a heart

By Burton Mail  |  Posted: September 16, 2013

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“I owe them my daughter.”

Teresa Richardson admits she doesn’t like thinking about the future – it’s too difficult.

But for now, the Midway mum is just so thankful she has a beautiful baby girl who is soon to celebrate her first birthday, a birthday her mother thought she might never see.

Little Rosie Richardson was born with Hypoplastic Left Heart Syndrome (HLHS) – essentially she was born with half a heart.

Despite it still being relatively rare, with only 200 babies born with it each year in the UK, It’s a condition we have become all too familiar with through the touching story of Winshill youngster Grace Mott, who has been featured in the Mail many times.

There is no cure, sadly the outlook is not bright. The oldest reported sufferer of the condition is just 22.

However, if it wasn’t for a lifesaving check-up - called a pulse oximetry test - at Miss Richardson’s 20-week scan at Burton’s Queen’s Hospital, there may well have been no Rosie at all.

“An antenatal diagnosis means the baby can be started on lifesaving medications immediately,” Rosie’s mum, of Elmsleigh Drive, told the Mail, “and it promotes a better outcome following the first open heart surgery.

“If Rosie’s condition hadn’t been picked up, and because pulse oximetry is not a standard test for newborns I may have taken Rosie home and been unaware of her condition until she became seriously ill.

“I am thankful to Burton Hospital every day for preventing this – I owe them my daughter.”

Rosie received lifesaving palliative surgery at just three days old – again this would not have happened without the condition being picked up at the 20-week scan.

Miss Richardson had known something was wrong at her 12-week scan as she had a high nuchal fold read meaning Rosie had a one in eight chance of having Down’s Syndrome.

This was soon ruled out but a heart defect was the prognosis. It turned out to be one of the most serious and complex heart defects.

The whole left side of her heart didn’t form at all.

It was a heartbreaking situation for Miss Richardson, still relatively young at the age of 25, but the care and support she has received at Queen’s has made it as bearable as possible.

“I knew she was going to have this for the rest of her life,” Miss Richardson said.

“You don’t know that there is anything wrong with her to look at her but it is always there and is really difficult to live with.

“She has had so many moments where she has gone blue and we’ve been at the hospital and they are just so amazing.

“My consultant throughout my pregnancy was amazing – she was just wonderful.

“It was really hard to move her care to Birmingham ready for delivery. The nursing staff in paediatrics (at Queen’s) are just lovely.

“We just go in and they know Rosie and they know our history and it is just lovely to experience good parts of the hospital.

“They are so comforting and really support you as it is such a hard time whenever a child has to go into hospital.

“They make you laugh and take your mind of things – they are wonderful.”

Despite the condition being caught early, it was still very much touch and go for mum and daughter during the birth and in the vital days that followed.

“It was a case of very close monitoring up to birth,” Miss Richardson said.

“Rosie had regular heart scans and regular growth scans as well.

“I had gestational diabetes as well a high blood pressure, so there was a lot of toing and froing from different hospitals.

“The staff were just so supportive and just answered all the questions that we had. We were told that there were options – we could have surgery and I would have been offered a late termination but that was something I never entertained.

“We opted for surgery. When she was born I had to have an emergency caesarean as they lost her heartbeat during labour so that was very difficult too.

“Then she had an operation at three days old. She was so small and so delicate – it was so surreal as I was in Birmingham for three weeks just completely away from my whole life.

“For the operation they only tend to give about a 70 per cent chance of success. She did really well. “Because we knew about her condition she was started on a drip of Prostin when she was first born and that kept her condition completely stable so she didn’t drop any oxygen saturation while we were waiting for it.

“When she was coming up to her second term operation she started to go blue an awful lot and we took her to Burton hospital regularly for check-ups and they were the ones that sent us to Birmingham for her second op.

“She spent three days in intensive care on full ventilation and they slowly weaned her off and she was just so strong – she just flew through it really well. She did amazingly well.

“The oldest person in the UK with the condition is 22. We don’t know what will happen. A lot of babies don’t survive the condition but Rosie is doing incredibly well for her age.

“Her abilities are well up there for babies of her age. Beyond her third stage operation I don’t like to think about the future at all.

“It is hard not being able to plan. You have your children and you think one day she will be a doctor, a scientist and she can do whatever she wants to do.

“She won’t be able to do that and there is the possibility she won’t be able to have her own children and if she does there is a high risk of more congenital defects.

“She will always be limited. She might not seem it now but it will catch up with her.”

The fact that Miss Richardson has seen first-hand just how vital a pulse oximetry test can be to saving a child’s life, unsurprisingly she is calling on the test to become standard procedure.

She said that only half of those babies born in the UK born with HLHS are diagnosed during the antenatal period, massively reducing their chance of survival.

“There is a massive amount of children that go undiagnosed and they are born. Pulse Oxygen taking isn’t standard in the UK so there are no tests done at all to make sure that the heart function is OK apart from listening to the chest.

“Rosie’s circulation is built in such a way that you wouldn’t have heard anything wrong to start with because her problems wouldn’t have started until a little duct closed that’s in her heart that allowed the oxygenated blood to go through her body and when that closed her body would have been starved of oxygen and she would have died, if she hadn’t have been to a hospital quickly enough.

“We were lucky because everything was in place for when she arrived.

“The (pulse oximetry) procedure is non-invasive. All it involves is a little tape that you wrap around the foot or the hand and it is attached to a meter and it gives you an oxygen saturation reading.

“It only takes a few seconds to get a reading and it doesn’t hurt the baby in anyway shape or form and it just gives you an idea of how well their heart is functioning because if they don’t have complete circulation, if they have, maybe, a hole in the heart or they have got any single ventricle disorder then their oxygen levels are not going to be high.

“It could just save so many lives – 5,000 babies a year in the UK are born with a congenital heart defect so 5,000 babies could be going home with all sorts of problems.

“We were just so lucky.”

Miss Richardson has the support of family and charity Little Hearts Matters, as well as her first daughter, six-year-old Lydia.

She is also keen to meet more families who have children with HLHS, including the family of Burton Mail child of courage award winner Grace Mott.

She said: “Lydia completely understands Rosie’s condition and can explain it. She likes to get involved and go to Rosie’s appointments when she is not at school.

“She is also starting to do some fund-raising for Little Hearts Matters because that is so important to her and she is meeting other siblings because it is really hard for them to come to terms with the fact that things like, when Rosie is maybe five and we want to go to a soft play she won’t be able to join in as much and that is going to be really hard for her sister to not be able to just get up and go with her.

“But she does so well with her.

“I use the internet forums a lot to ask questions to other heart families and they are on Facebook now as well.

“It is really nice to meet other heart families – nobody knows what you go through unless they’ve already done it themselves.

“You are desperate to no anything but the internet is so horrible as it is never full of good news.

“I’m in touch with a few families – there is a fund-raiser for a little girl called Grace Mott in Burton so we are going along to meet little Gracie as she has got the same condition.”

Such is the condition and the short lifespan for sufferers, it means that the future is hard to think about for Miss Richardson.

The battle is very much ongoing with a condition like HLHS.

“She will need another operation around the time she starts school – between three and five,” Miss Richardson said.

“That will complete her altered circulation – when she has that op the whole of her right side will have been split into two and it will be doing the job of a full heart, just with one pumping chamber.

“She will always be limited – she will only ever have half a heart. The oldest person in the UK with one is 22 so beyond that we don’t really know what happens.

“Heart failure is a possibility at any stage. She will always be tired and won’t be able to do any competitive sports because of her chest surgery.

“She will be on medication for the rest of her life – blood thinners and anti-coagulants. She did have some seizures during her first op which was a very worrying time.

“She is still on medication to help stop those happening.”

For now though Miss Richardson has a gorgeous baby girl who fills every living moment with joy.

“Rosie is really loving and happy,” she said. “She never complains. She has been through so much and is just really bouncy.

“She won’t let anything phase her – she will go to the doctors and just sit there and let them prod and poke her.

“I never have a problem with her.”

Further information is available about HLHS at www.lhm.org.uk

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