I and Daniel found out at our 20 week scan that our baby had suspected HLHS, PA and TGA we went back and forth fortnightly to check his progress which never really changed. I was induced on 16th April and Jacob was born 05:13am on 17th April 2017 weighing 8lb 9 1/2oz. luckily for us, once they scanned Jacob, they found he had a variant of HLHS but no PA or TGA. He had his first open heart surgery (Norwood) at 5 days old; it was possibly the scariest time of my life. Yet, Jacob recovered exceptionally quickly. Surgery was on a Friday, on Saturday his chest was closed and Sunday he was off the ventilator breathing with a small amount of oxygen. By Monday we were back up on ward 11 on HDU.
Within 2 short weeks we were home Jacob was feeding from a bottle on normal baby milk, gaining weight and doing amazing!
Although I can honestly say I didn’t sleep for months, checking him up to 20 times a night it took its toll on me in the long run, the worrying was uncontrollable and the fear of Jacob catching any kind of virus turned me into somewhat of a recluse but we were safe in a bubble, we constantly checked family were well before visiting and got very paranoid when out and about.
As time went on, we got more confident in going places and fortnightly check-ups were gradually reduced to monthly ones. Jacob continued to thrive and slowly his medications were reduced.
At 3 months old, Jacob’s oxygen levels started to decrease and we noticed a change in his colour and energy levels so we were admitted for a cardiac catheter procedure. They found his aortic arch had reduced in size, reducing the amount of oxygen flowing so they did the balloon dilation at this time. Otherwise, everything was looking ready for his second open heart surgery.
Two weeks later, we were admitted for the Glenn surgery which took a little longer because Jacob kept desatting upon arrival back to PICU. Jacob continued to desat sometimes right down to 30% and he couldn’t be taken off the ventilator. Then, after a few tests, they had confirmed Jacob had Rhinovirus (common cold) and the ECMO had pushed secretions down to his lungs which were causing him difficulty in breathing. We were moved to a side room and Jacob stayed on the ventilator for another 5 day after 2 failed ventilator removals.
Eventually, Jacob started to recover and the ventilator was removed and Jacob was put on vapotherm (warm air and oxygen). Jacob still struggled to get well and it was found that his lungs had collapsed. This happened several times so more chest drains were put in to help and Jacob started to have physiotherapy 3-4 times a day which helped considerably. By day 10, Jacob was well enough to go back up on ward 11 he was back on 1lt of oxygen and doing really well, we started to see a happy Jacob at last. One morning they discussed moving the last chest drain, giving him a bubble bath and there was even talk of home!
The nurses came in and remove the chest drain while I ran a bubble bath but unfortunately it was removed. This caused Jacobs right lung to collapse again, leaving him screaming. His oxygen levels dropped considerably. Several doctors came into the room and gave him an x-ray. Within minutes, they realised what had happened and we were rushed back down to PICU and put on a ventilator while another drain was inserted. This had to be one of our lowest points. it was difficult to watch our baby boy back not breathing by himself when we felt so close to going home.
The next day the ventilator was removed and Jacob was happy and smiling again. We were back up on the ward and Jacob just needed a little more time to recover. A week later, we were going home and Jacob had never looked better he was so pink it was amazing to see!
After a few weeks of being home reflecting on what happened plunged me into quite a bad depression, I couldn’t get these images out of my head. I wasn’t sleeping. My diet was all over the place and I was exhausted. After speaking with friends on LHM Rachel at BCH and Suzie I felt I needed some help at this point. I spoke to my GP who put me forward for some counselling which I am still currently attending.
Jacob is doing well at the minute, we’ve had a good few months with no worries and he has now been medication free since April 2017. I don’t know many children who are in the same position.
Jacob has started showing signs of cyanosis so eventually his appointment has been brought forward at BCH and we were checked on 2nd July where they have found no reason for this to be happening. We needed a cardiac catheter in October to check for collaterals and we have also been told his 3rd open heart surgery will be brought forward due to the fact he is doing well but needing more oxygen.
The truth is we live with Jacobs’s condition daily and it affects him and the whole family, but I couldn’t do it without the love and support from friends and staff at LHM. Every day is different and people always ask questions, some are rude and some genuinely want to know. I am always happy to share his story and spread awareness of this condition that I honestly never knew existed until Jacobs’s diagnosis. I am scared or Jacob’s future and try to enjoy each day as it comes as I always feel tomorrow isn’t promised.