Alex is 14 months old, he was born a twin in 2018. A cesarean was booked for 36 weeks due to both twins being in transverse position.
Alex cried initially but then ‘crashed’. He was rushed to NICU with suspected sepsis/infection/fluid. He was placed on cpap but whenever they tried to change him to oxygen through his incubator he struggled with his sats.
On the fourth day after birth the doctors said they were struggling to get a cannula in, we presumed he’d kicked it out again so didn’t think anything of it. I was feeding William, Alex’s twin, in the next room when a specialist cardiologist came in and said that they had to place the cannula in Alex’s fontanelle and had to intubate him to take over his breathing.
At some point someone said ‘We think he has a heart defect’.
Embrace came to transfer Alex to Leeds. William and I couldn’t be discharged so Alex’s dad went with him. My other four children were taken home by a friend.
A couple of hours later Rob came back, walked in my room with my midwife and sat down. I begged him not to say my baby had died. It was then that he relayed as much information as he could, information he’d only just been given and hadn’t even processed himself. Alex was diagnosed with hypoplastic left heart syndrome - he only had half a heart.
It was another four days before we would find out whether Alex was a candidate for surgery. We spent every minute by his bedside, placing William next to him as much as possible. Their bond was already so strong and they snuggled into each other all the time.
At 9 days old, Alex was taken for his first open heart surgery, we were told it would taken about 8 hours but it was almost twelve before I had the call to say Alex was on PICU.
Alex was in a bad way, his heart rate was 225bpm and the surgeon stayed by his bed most of the night trying to stabilise him. By morning they had administered as much medication as they could but his heart rhythm and muscle were damaged. We were in discussions with the surgeon about placing Alex on ECMO as she said he wasn’t going to make the night. When she took a call and ran to his bedside, his blood pressure had dropped and he was now on ECMO. He was on ECMO for six days in total and his kidneys and liver took a hit. At his worst he had 20+ lines/medications in his tiny body and multiple blood transfusions. It was another 16 days before he was moved from PICU into HDU on the cardiac ward and another two weeks before he moved into a side room.
Alex spent seven weeks in hospital. He came home on NG feeds due to an unsafe swallow, aspirations, severe GORD and severe oral aversion. You couldn’t even touch his face without him panicking and vomiting. He struggled to gain weight so was given Calogen too.
Four weeks after discharge Alex was readmitted with an infection in his scar. During a standard echo the same day, we found out that Alex had a large blood clot in his heart. He began daily blood thinning injections on 1st May 2018. He still has the clot and the injections.
Exactly 6 months to the day of Alex’s Norwood, he went back down to theatre for his second open heart surgery. Again we were told 4-6 hours, it was 8 hours before he was in PICU.
Alex miraculously left hospital after just 10 days. He was struggling on his new feed of 75ml but we were told to persevere. A week later, Alex was rushed into hospital with severe dehydration and had to reduce his feeds to just 5ml an hour and increased to 20ml after three days. He was then slowly changed back to 3 hourly but he could only tolerate 60ml again.
Six weeks after being discharged, Alex was rushed into resus with sats of 59. He was admitted into HDU with bronchiolitis, RSV+ and a chest infection. He was discharged after ten days but it meant his gastrostomy had to be cancelled and left for at least six weeks.
Alex was constantly pulling out his NG so they used a nasal bridle to keep it in place. He had this in for six months (the maximum) before he finally had his gastrostomy and fundoplication in February 2019. After being cancelled four times, we were told to expect at least two weeks in hospital and Alex would be going to PICU due to issues after his first operation. Alex did amazingly well after surgery, he was moved to HDU after 24 hours and left hospital after six days.
It was only another week when he was admitted again. He was rushed into resus by an ambulance with suspected sepsis. He was admitted and placed in isolation. After three days Alex became incredibly poorly. He had lost 740g in just three days, his eyes were sunken and his skin grey. The doctors couldn’t get a blood pressure from him and his veins kept collapsing. They managed to find a thin, tiny vein and manually pushed through 300ml fluid before they could get a reading from him. That night his veins collapsed again and they had to cannulate into his head. They finally managed to stabilise him but found out that his kidneys and body had taken drastic action in response to infection and sent his blood gas levels into disarray. He needed substantial fluid resuscitation and we now have procedures in place for urgent assessment for dehydration and fluid resuscitation at the first sign of loose stools or vomiting.
Alex shouldn’t be able to vomit but he can, he was retching continuously and his gastro surgeon has had to give him some medication to help the nerves in his stomach. This medication can affect his heart and he is now struggling to tolerate even 60ml of milk so is on continuous feeds. He seems stable with this but if he can’t tolerate more then the next step is a jej tube through his g-tube site.
Alex hardly put on any weight from August 2018 to April 2019 and has restarted back on a high dose of Calogen. He still wears 3/6-6/9m clothes. He has severe development delay, he can’t roll, sit or bear any weight on his legs but his smile lights up the whole world. He is such a special, beautiful little boy and you can see in his big brown eyes that he is eager to copy his twin. He is cheeky and funny. He calls out ‘baba’ for William and they have such a special bond. William loves to kiss him and they hold hands and touch each others faces at every opportunity. He is besotted with his four older siblings.
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