He’s a baby boy with a cheeky smile.
And Kobe Johnson’s family, from Netherthong, are also smiling now as the tot recovers from serious heart problems.
His parents, Wayne and Kelly, are so grateful for the help they received from the children’s charity, The Sick Children’s Trust, that they have embarked on a fundraising campaign to help other families.
Kobe was born with a heart condition called pulmonary atresia with ventricular septal defect and needed specialist treatment in Leeds General Infirmary.
He spent 10 days in intensive care after a major heart operation at the age of seven months and his parents were able to stay close by in Eckersley House, one of the charity’s ‘Homes from Home.’
Now Kobe is back home but will face further surgery in the future.
Kelly said: “Wayne and I found out our baby had a heart condition following my 20 week antenatal scan. We were referred to Leeds General Infirmary where after many specialist scans, teary consultations and a second opinion in Birmingham, it was confirmed that our baby had a heart defect called pulmonary atresia with ventricular septal defect.
“We were told that our baby would need life saving surgery in the first few weeks after being born and subsequent surgery throughout their life. We were then informed of the various options available to us and after a lot of research and many discussions we made the decision to continue with the pregnancy.
“We named him Kobe Luke Johnson before he and due to the severity of his condition I would need to give birth at Leeds General Infirmary where he would be taken into the high dependency unit and immediately put on specialist medication to stabilise his condition”.
Kobe was born on September 7 last year and Kelly said: “I only had a moment to hold him before he was whisked away to the neonatal special care unit but I have a photo to prove that in that time he smiled while I held him. After a few days on the labour ward I was told that Eckersley House had a room for Wayne and I to stay in once I was discharged from the ward. It was to become a home to us for over three weeks”.
Kobe had his first operation when he was just two weeks old. Surgeons performed micro-surgery to put in a Blalock-Taussig Shunt, which relieved some of the symptoms from his condition. It was a temporary procedure to help Kobe until he grew a bit stronger to have his second major operation.
That took place in April when he was seven months old and again his parents were able to stay at Eckerlsey House.
“Kobe’s surgery took far longer than planned due to various complications and I can honestly say it was the longest day of our lives waiting to see him come out of theatre”, said Kelly.
“We were able to be there with him night and day and maintain a semblance of normal life in a situation that was anything but normal.
“After 10 days in intensive care Kobe was moved onto the high dependency unit. He was finally discharged from the ward six days later and we are thrilled to say that he has recovered well and is doing brilliantly.
“Our friends and family were all taken aback by the facilities provided to us by The Sick Children’s Trust and always commented on how amazing it was for us to be able to stay so close by to Kobe free of charge. We have been very lucky that since our last stay in Eckersley House our family and friends have played a vital role in helping us to fundraise for the charity”
So far the family have raised over £1,200 and plan tom do more fundraising.