~Posting this on behalf of a client of mine to raise awareness~

 

1 in 145 babies are born with a congenital heart defect. When a baby is born they check for hearing but not for a congenital heart defect which is the number one birth defect.

The Childrens Heart Federation are asking the Government to put in place a test called the Pulse Oximetry Screening for all newborn babies. A study of 20,055 showed the test had a success rate of 75%. The test monitors the amount of oxygen in the blood.

We need your help to get this passed and made a legal requirement for every hospital in the UK to perform this test as a standard procedure.

Please sign our E-petition and help save a baby’s life today!  Please read Kierans story below as if this test was available perhaps it would not have taken for him to be 10 weeks old before we found out about his heart condition and was in heart failure.

For more information please visit www.chfed.org.uk/campaigns/chf-pulse-oximetry-campaign

Kieran’s story

When Kieran was born in Jan 2011 he was struggling with his feeding and was sleeping a lot, after lots of trips to the drs and being fobbed off we found out when Kieran was 10 weeks old had a VSD (Hole in his heart) and would need to go onto two different heart medicines and special milk, the milk ended up making him ill so on 18 April 2011 we spent a week in Norfolk and Norwich hospital ending up with having a NG tube so they could get fluid into him and also help him put on weight.

In October 2011 they decided that Kieran needed to have an open heart operation at Great Ormond street hospital to close the hole as it was now causing a leaky valve. On the 8 Feb Kieran went down for his open heart op at 9.45, 5 hours later we were allowed to see Kieran in CICU (Cardiac Intensive Care Unit), Kieran was moved onto the Ladybird ward on the 10 Feb and was recovering well but soon become dehydrated as he was vomiting and not keeping his fluids down. Kieran’s chest also sounded chesty so they did a x-ray to check for infections and put him onto the nebuliser to help with his breathing. As Kieran was still not getting enough fluid into him they decided that he needed to have a NG tube fitted so they could put milk down the tube straight into his stomach (Kieran decided he did not want the NG tube as that night he decided to pull it out). On the next day they decided that they needed to put another NG down to his stomach to get more fluids in.

On 16 July Kieran was still not recovering as they had hoped so they did a heart ECO and ECG to have another look at his heart,  we were given the bad news that the hole had not closed and would need to have another open heart surgery within the week to re-close the hole. We had also found out that Kieran had caught the nurovirus and meta pneumo virus (Like a cold virus) so that was delaying his recovery.

On Wed 22 Feb Kieran was taken back down to theatre at 2.30pm and we got to see him again at 6.30pm, he was taken back to the CICU where he was back onto the ventilator, chest drains and wires all around him. Kieran wanted to come around too quickly so they had to up his morphine and was taken off his ventilator at midnight. Kieran was doing really well and was taken his milk and food so they removed all his drains and wires. Kieran had his ECO and ECG re-done and they showed the hole had closed and only had a slight leaky valve that will be monitored and was allowed home on Sat 26 Feb.

We spent 3 weeks in Great Ormond Street, the hospital and the staffs are fantastic, it is very stressful being in a strange place with your little boy being ill but the staff are all amazing

 

congential heart defect.

Kieran in cicu after 1st op

 

 

congential heart defect.

Kieran on the ward recovering

 

Link to sign e-petition – http://epetitions.direct.gov.uk/petitions/37286

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