Guest blog by Norah's Mummy - Norah has Heterotaxy Syndrome a rare congential abnormality

It’s been almost a year since we walked into the hospital with nervous anticipation, excited to see our baby. We’d had a private scan only four weeks previously and found out we were having another little girl.

We were days away from moving house, upsizing ready for our new addition and we had started trawling through Pinterest for ideas on how we were going to decorate her room. We sat in the waiting room that day looking at Instagram-worthy images of nursery’s and talking paint colours and baby names, unable to agree with each other on anything!

Just before we went in I remember saying to my husband “I hope it all goes ok” and his typical laid-back response of “yeh of course it will!” Part of me wonders now whether subconsciously I always knew something wasn’t right.

As the sonographer  silently studied the screen I noticed she kept coming back to the baby’s heart again and again. Everything seemed to happen in slow motion as with a sympathetic voice she said “I just want someone else to come in and have a look if that’s ok.” A referral to fetal medicine was made and we were ushered through the back and handed free photographs.

We didn’t have any kind of diagnosis at that point but it was clear they suspected something was very wrong and the little future we had been planning in the waiting room was suddenly being thrown out and replaced by uncertainty and fear.

Over the next two weeks we would have appointments with fetal medicine, amniocentesis, an MRI scan in Sheffield, genetic testing and ultrasounds at GOSH. What followed was complete emotional turmoil as we moved house with our three year old daughter, whilst also trying to gather all the information we could to make a decision on whether we wanted to continue with the pregnancy.

It felt and still to this day feels an incredibly traumatic time. How do you make a decision at 23 weeks on whether you want to continue with a very much longer for pregnancy or whether it’s in the baby’s best interests to say a heartbreaking goodbye and choose to not give that baby a chance?

With the support of our family,  community midwife’s, the fetal medicine team and the perinatal mental health team we navigated our new normal and planned for a different pregnancy and birth.

Our daughter has Heterotaxy Syndrome, specifically left isomerism, a rare congential abnormality affecting 1 in 10,000 people. Her stomach is on the wrong side of her abdomen, her liver in midline, she has Polysplenia, two left lungs, a heart with two left sides and an interrupted IVC with azygous continuation. We were told not too google but it was impossible.

I scoured Facebook and Instagram under the hashtag of heterotaxy trying to find other families with children with the condition. I was able to connect with a few parents from around the world which helped but it became clear that outcomes very much depended on factors that we wouldn’t find out until she was born.

The rest of the pregnancy was full of unknowns. GOSH painted a positive outlook depending on the severity of malrotation of her stomach and bowel, her splenic status  and on whether she had a condition called biliary atresia, however I grieved for the baby I thought I was having and struggled to feel connected to my pregnancy in any way. Whereas previously I had been excited to have a second child I now felt like somehow this  baby wasn’t mine and tried to pretend it wasn’t happening.

When we moved house all the baby equipment and clothes were placed into the spare room and the door shut. I couldn’t bear to go in there and look at any of it. The more the baby kicked the less I was able to pretend it wasn’t real and each little kick and wriggle was a painful reminder of the reality for our little girl.

We spoke at length to paediatric surgeons, fetal cardiologists, neonatologists and the NICU team about the plan for birth and what would happen afterwards. Before our daughters diagnosis I had planned to have a homebirth, something which obviously couldn’t go ahead given that she would need to go to NICU when she was born and I was told that induction at 39 weeks would be recommended.

It felt like another blow, something else that had been taken out of my control and a million miles from the peaceful birth at home in my living room that I had planned! As I approached full term I questioned whether I needed to be induced or whether I could be given extra monitoring and wait for baby to make an appearance.

I was told induction would still be preferable but I felt confident enough from the scans and monitoring that she was tucked away safely and would come when she was ready. Unfortunately I hit 42 weeks and she still wasn’t budging so I decided that for the sake of  my own mental health, which had begun to deteriorate further as the uncertainty of her birth approached, I would take the induction.

On the 16^th July in the early hours of the morning, our daughter Norah Rose arrived. After a difficult start following a traumatic forceps delivery we  were able to spend a precious half an hour with her skin to skin before she was taken to NICU. Months of worrying about bonding with her melted away and were  replaced by a fierce need to protect her. The grief, fear and uncertainty was still there but there was joy there too. She was here, she was being looked after and she was loved.

Hannah will be blogging again and I think we can all agree what an incredible mum she is, Norah is so loved by her family and below is a recent photo of her. She is very cheeky and oh so cute!