Because of Carin: Seth

Heart mum Charlotte found out at her 20-week scan that her little boy Seth had Transposition of the Great Arteries.

Charlotte told us about Seth’s journey through treatment at the Leeds Congenital Heart Unit and how he is faring back home in Chesterfield.

Seth was diagnosed with Transposition of the Great Arteries (TGA) at the 20-week scan in Chesterfield and had life-saving open heart surgery in Leeds at just 9 days old.

At that point they could see no other defects but as he grew bigger they were hoping they would find an Atrial septal defect (ASD) as well, which would mean oxygen would mix more into the blood. As the weeks progressed it became clear that he only had TGA and he would have very little oxygen mixing.

 

We live over an hour away from Leeds and there was concern over me going into labour early, so an elective caesarean section was booked in at 38 weeks so the team could be ready to perform Seth’s balloon septostomy after birth.

On the August 19th we travelled to Leeds for the C-section. Seth was born screaming but he desaturated very quickly and needed to be resuscitated and ventilated.

 

I just saw a glimpse of his hair before they rushed him away – my partner was able to go with him whilst I was stitched back up. I was really lucky to have a wonderful anaesthetist that kept my spirits up and supported me whilst I was alone in theatre.

 

The team then performed Seth’s balloon septostomy, and I was informed it went to plan. It was several hours before I could go to see him in the Neonatal Intensive Care Unit (NICU).

 

Nothing prepares you for seeing your baby attached to all the machines. I thought I had done enough to prepare for that moment – I’d contacted several parents in a similar position and spent hours on support pages and Google, but seeing my own child in that position, not knowing what the future would hold for him was the most awful feeling.

 

I wanted to celebrate his birth but I felt like I shouldn’t. He was doing well but I didn’t want to tempt fate. I struggled with telling people he was born, for the same reason.

 

Seth spent the first few days in NICU – he progressed off his ventilator and could be moved to the High Dependency Unit (HDU) there. He became very jaundiced and needed phototherapy but again, he did well and eventually after another three days he moved onto HDU on the children’s heart ward (L51) where he worked on gaining some weight before his surgery.

 

On day 9 he had his arterial switch. We walked him down to theatre at 8am and there are no words to describe the feeling of leaving your baby in theatre – not knowing if you would see them alive again. We had watched him look as though he was getting better, he looked so healthy the morning of surgery which made it so much harder but we knew the symptoms were being treated and ultimately he needed the surgery.

 

Carin van Doorn was Seth’s surgeon, we are so pleased that he had the best surgical team. We can’t thank her enough for what she’s done.

Eight hours later we got the call to say that he was doing well and we could go see him in the Paediatric Intensive Care Unit (PICU).

 

Those eight hours were the longest hours of our lives. We had tried to distract ourselves and go into the city centre but somehow the noise made us feel worse and we decided to stay close by in the hospital instead. I was so scared to answer the phone but equally was scared to miss the phone call.

 

The surgeon explained that there had been an issue with one of his coronary arteries but they got a good result in the end. They left his chest open in case they needed to go back in to resolve anything but the day after everything was still looking good so they decided to close his chest.

 

After only three days on PICU he stepped back onto HDU.

Seth’s weight continued to decline over the coming days. We went out to buy smaller clothes for him as he was now smaller than he was at birth. He was tolerating his feeds well through his NG tube but still continued to lose weight so it was decided he would start on a high energy formula with extra calories to help him gain some weight.

 

I struggle with agoraphobia and the idea of being over an hour away from all my family and friends, alone in hospital was enough to set off my panic attacks. CHSF helped us by putting my partner into the parent accommodation, so I didn’t have to be alone.

 

We had been paying for hotels prior to this, but couldn’t afford to keep on. We had been left a support pack, so I contacted the Family Support team on the email provided. We were so grateful to hear back the same day and have one less stress off our minds by being able to stay in CHSF’s Brotherton Wing accommodation. 

 

We can’t thank CHSF enough.

 

Seth’s recovery from surgery went well, his scans were all looking good – so the last hurdle was weight gain and hopefully the removal of his NG tube. We transferred to our local hospital to be closer to home and finally on day 21 we were able to go home – as he was free from the NG tube and gaining weight.

Seth’s recent echos are all really good and his weight gain is continuing. He is still having regular blood tests at our local hospital for high calcium and iron but the levels are reducing each time so fingers crossed that on the next results he’s back to normal! He’s still taking diuretics but again, hopefully at his next echo he can stop them.

 

He is loving being at home with his big sister Belle and his little furry sister Bonnie. We are so glad to be home as a family and so thankful to everyone involved in Seth’s care.

 

We will be forever grateful. 

To find out more about the ‘Because of Carin’ fundraising appeal, click here.