told by mum

 

Kieran was born on the 28th of January 2011 as a healthy baby boy, was discharged from hospital at 2 days old. A couple of days after being home we noticed Kieran spent most off his time asleep, he was struggling with his feeding taking over an hour to get a bottle into him and then he vomited it back up, he was also not putting on weight. After lots off trips to the Doctors, being fobbed off that he was a lazy baby, also told over the phone he had colic, we also took him to a walk-in center who said he needs to see a pediatrician but still could not get anyone to listen to us.

When Kieran had his normal 10 week check up at the doctors he listened to Kieran’s heart and said has anyone ever listened to him heart, the doctor said he could hear a loud heart murmur and was in heart failure, within a week we was up Norfolk and Norwich hospital having his heart scanned, we found out the horrible news that Kieran had a VSD (Hole in his heart) and would need to go onto 2 heart medicines and a special milk which was high in kcals. The milk ended up making Kieran ill so on the 18th April 2011 we spent a week in Norfolk and Norwich hospital ended up having NG tube so they could get fluid into him and also to help him put on weight. Kieran was discharged from the hospital where we carried on struggling to bottle feed him.

In October 2011 they decided that Kieran needed to have open-heart surgery at Great Ormond Street Hospital (GOSH) to close the hole in his heart as it was now causing a leaky aortic valve. On the 8th Feb 2012, aged 13 months, Kieran went down to theatre for his open heart operation at 9.45am, 6 hours later we were allowed to see Kieran in CICU (Cardiac intensive care unit), Kieran was moved onto the ladybird ward on the 10th Feb and was recovering well but soon become dehydrated,  vomiting and not keeping 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, they decided that he needed to have a NG tube fitted so they could put his milk down the tube straight into his stomach, Kieran had other ideas about the NG tube and pulled it out which resulted in another one having to be done.

On the 15th Feb 2012 he was still not recovering as they had hoped so they did a heart eco and ECG to have another look at his heart, we was given the bad news that the hole had not closed as the patch has come undone and he would need to go back to theatre for open heart surgery, we also found out that Kieran had caught the norovirus and meta pneumonia virus (Like a cold)so that was delaying his recovery.

 

On Wednesday 22nd February 2012 Kieran was taken back to theatre at 2.30pm for them to re-do his heart operation and reclose his hole. 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 the ventilator at midnight. Kieran was doing really well and taken his milk so they removed all drains and wires. In total we spent 3 weeks at GOSH where the staff was fantastic and supported us during our stay.

Kieran carried on seeing Dr Derrick at his clinics at Norfolk and Norwich as they was monitoring his leaky aortic valve, in 2021 it was decided that they wanted to do a CT and a transoesophageal to get a more detailed look at his heart, we travelled to Gosh on 1st June 2021 where Kieran had a general anaesthetic to have the CT and camera to look at his heart, we travelled home to wait for the results.

We received a letter to say they feel that Kieran needs to have another heart operation done due to the leaky valve and putting his heart at risk, we waited a while for the date to come through. They decided they would try to repair his valve, use a mechanical valve or do a ross procedure.

On the 17th may 2022 we travelled up to London for Kieran’s pre op and discuss which operation they would do, we felt Kieran would benefit more from the ross procedure, returned home and was getting ready for his operation date. On the 23rd June 2022 we travelled up to GOSH ready for Kieran’s operation the next day, sadly when we arrived for this operation we found out that it had to be cancelled due the other child’s operation running over, we was all feeling upset as had worked ourself up ready for the operation. We returned home and waited for a date. We received the new date for the 15th July 2022.

Kieran returned back to the hospital on the 15th July where he was taken down to theatre at 2pm, Kieran had open heart surgery to do the ross procedure, they taken out Kieran’s damaged aortic valve and replace that with his pulmonary valve, a replacement pulmonary valve then gets used. Kieran come back to CICU at about 9.30pm and we went to see him.

 

 

 

Kieran had a high temperature and they was keeping an eye on him, they did chest x-ray and other tests, the blood test showed he had high infection levels and was given antibiotics. Kieran was taken off the drains and the wires and moved onto the ward. Kieran’s temperature kept raising and had more blood tests. A CT scan showed that he had an infection under his sterman. Kieran had to have more cannular done so they could give him 2 IV antibiotics, the cannulas kept failing. They decided that he would need to be on IV antibiotics for 6 weeks so Kieran, with a struggle as he was so scared had to go to theatre to have a PICC Line fitted and stayed into hospital while they was given him the IV, in between the IV Kieran was able to go out off the hospital and we visited a couple off different places near the hospital.

We was waiting for a hospital bed to come available in our local Norfolk and Norwich hospital but had to stay at GOSH until this happened. We were told that instead off going to the local hospital they would get a community nurse to come to our house to do the IV and moved Kieran onto a tablet antibiotics and just the 2 iv antibiotics, Kieran was feeling happy thinking he would soon be going home but on the 6th August 2023 the doctors at GOSH noticed Kieran’s heart rate was very fast and moved him onto the high dependency unit. They started him on a heart medication and also blood thinners to help, we signed a form for Kieran to go down to theatre to have his heart shocked but by luck Kieran’s heart returned to a normal pace. He continued on the heart medicine for high heart rate and stayed in high dependency ward.

After 4 weeks at GOSH we were finally given the good new on the 11th August that Kieran would be discharged into the care off the community nurse and returned home to continue his IV at home, Kieran kept being sick so we spoke to the local hospital where Kieran ended up staying a night, they discussed Kieran with GOSH and removed him from on the antibiotics, Kieran continued to have the IV antibiotics at home until the start of September.

Kieran carried on being monitored for his fast heart rate and had some 24 hour heart monitors done, they was happy with his heart rate and took him off his medication, Kieran continues to have yearly check ups for his heart.

 

 

 

 

 

 

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.