Dylan’s Story

Dylan’s heart conditions, coarctation of the aorta and aortic stenosis, were not detected until he was four and a half weeks old. Tragically, he passed away when he was ten weeks old. Here, Dylan’s mum Jaspreet tells their story in her own words:

Our sweet boy Dylan was born on 9th February 2021 weighing 6.5lb at 10.37 pm. During a 16-hour labour, Dylan suffered trauma to the head while undergoing an examination to check how dilated Mum was, whilst his heart rate was rapidly fluctuating. Due to this, Dylan was kept in hospital for a week after birth for further examination, however his heart defect was not detected.

Dylan is one of the 1000 babies that leave the hospital with an undiagnosed heart condition every year.

After four and a half weeks, we recognised that Dylan was very sleepy, his cough became chesty and his cry sounded muffled. This led us to call 111 on the evening of 14th March 2021 (Mother’s Day). We were told to go to the hospital as Dylan’s breathing was fast, but his lungs were clear.

The hospital began treating him for bronchiolitis. After two days the doctors decided to perform an echo on Dylan’s heart, as his symptoms were not consistent with bronchiolitis as his lungs were clear. The echo showed he had a coarctation of the aorta and an aortic stenosis. They found out Dylan was already in heart failure and he was rushed to a specialist cardiac centre.

He was operated on immediately at 2am in the morning, where surgeons were called in an emergency. We were told that Dylan wouldn’t make it through the night if he didn’t have this life saving procedure, a balloon procedure, in order to widen the valve to let more blood flow through. During this procedure, the valve ruptured meaning 100% of blood was flowing out but 30% of blood was flowing back into the ventricle. This meant that only 70% of blood was being pumped out. Dylan also had two narrow sections in his archway which meant that even less blood was flowing around the body. He also suffered a stroke during the procedure.

By some miracle Dylan pulled through. He spent four weeks in ICU, where he was recovering from heart failure and the balloon procedure that saved his life at five weeks. Ten days later he had a heart operation, where surgeons made an incision in his back to repair part of the narrowing in his archway.

After eight hours of having this operation, Dylan was taken off the ventilator and was given a small amount of oxygen to help with his breathing. Dylan didn’t relapse and was able to breath without the support of the ventilator and doctors were impressed with his progress.

Six days later he was put under general anaesthetic again so doctors could insert a PICC line into his arm – the lines they were using during his operation were soon to be at risk of infection if it passed a further six days. Within 48 hours Dylan was off the oxygen machine, his medications had been switched to oral, and was on very little pain relief. He was allowed to wear clothes again and his catheter had been removed. We felt like we got our baby boy back.

Dylan moved out of ICU and into HDU where he spent a further seven days. During this time we realised that Dylan kept coughing and choking and later realised that he incurred vocal cord damage as a result of the second heart operation which he had to repair the archway. This meant that Dylan was at risk of aspirating and therefore we had to make adjustments to his feeding, including breast feeding for no more than 10 minutes and top ups given through an NG tube.

Dylan was transferred to the ward where Mum was allowed to stay with him overnight. This transfer was essentially to make us feel comfortable with Dylan’s feeding needs, so they wouldn’t feel overwhelmed once Dylan was discharged. From a medical perspective, they had minimal handling of Dylan and we were looking after Dylan, but the medical professionals were on hand should they be needed.

One day before Dylan was discharged, his heart rate increased to a level which caused us to panic. An ECG was conducted and the medical team were ‘happy’ with the results as it showed a good rhythm. The increased heart rate was explained as, ‘This is Dylan’s new normal and the medical team are aware and are ok with the increased heart rate as it increases then drops’.

Dylan was discharged home, but was taken back to his local hospital after two days as there were clear red flags. He spent three days in hospital being monitored every few hours and the results were relayed back to the specialist cardiac centre.

Dylan sadly lost his battle four days after we took him to the local hospital on 20th April 2021 at 10 weeks old. We are still waiting for the post mortem results to confirm the cause of his passing.

Had Dylan’s heart condition been detected earlier, his story may have been different and we believe he wouldn’t have suffered.

Find out more about our support for bereaved heart parents here. If you would like to create a free online tribute for your child, find out more here.