Tetralogy of Fallot: Ethan’s Story (Part Four)

Sarah discovered her baby, Ethan, had a heart condition called Tetralogy of Fallot (TOF) at her 20 week scan. You can read the first three parts of their story here

Tetralogy of Fallot: EthanEventually Ethan was back to ‘just’ the ‘usual’ monitoring and the doctors were happy for him to undergo the next phase of his recovery back on Ward 30. What a different world Ward 30 was compared to PICU! I found it absolutely remarkable how quickly Ethan was able to heal and before long I was finally able to really try and establish breastfeeding.

It was hard and actually soon became the last of a long list of things that needed ‘ticking off’ for us to be discharged. I was on the verge of
giving in and choosing to bottle feed so we could just go home and start our lives afresh. To the point where my mum brought all of our bottles into the hospital so we could practice with the bottles we’d be using at home. I felt uneasy but didn’t know what else to do at that point.

Then finally, on Thursday, a very kind nurse who I had explained my feelings to supported us and got the doctors to agree to remove the NG tube so I could have one last stab at feeding him myself. My instincts told me that being constantly ‘topped up’ by tube feeding and with the tube itself impairing breathing on one side were the reasons Ethan wouldn’t feed from me for very long. Remarkably,
once the tube was removed, just like that, he started taking to the breast, feeding for longer and longer each time.

The following day (2nd November) we were discharged – it took all day but finally at around 7pm we left the hospital and drove home.

Just as a bit of a side note I wanted to share a few of the lovely things that happened to us whilst in hospital (in the darkness, there were still moments of joy with our newborn bundle and also a whole host of people that made the experience just that little bit more bearable). Ethan was cared for by some wonderful nurses and doctors who were kind and compassionate to us. Little touches like arriving at his bedside and finding he’d been lovingly swaddled in soft blankets with ‘monkey’ tucked in beside him. Making his first bath such a delightful experience for us. Supporting me when I had tears in my eyes. Encouraging us to take a break, to eat, to rest. The nurses kept a diary of Ethan’s time in PICU, to record his heart journey. It’s a lovely book to be able to show him when he is older, when he wants to know what happened to him and why he has a scar on his chest.

Whilst in PICU, one of the Play Specialists took Ethan’s handprint and footprint and thanks to a fantastic charity called Wishes for Kids, they were used to create a beautiful necklace and keyring for us to treasure. Ethan was also gifted a lovely handmade quilt by the wonderful Project Linus – he uses the blanket all the time to play on and he loves the bright colours and patterns. The charity Heartlink deserves a special mention for all of the great facilities, equipment and support they provide to patients and their carers at Glenfield. It was thanks to them that we could stay at the hospital and be close to Ethan for the duration.

We received so much support from our loved ones – my mum (Nanny) stayed at our house whilst we were in hospital, visiting us and supporting us through every stage in the journey. Chris’ mum (Nana) was also able to visit us and provided love and support. We received so many messages of love from our friends that buoyed us up when we really needed it.

Tetralogy of Fallot: EthanFollowing discharge from the hospital, we had to administer Ethan’s medication at home, which included Captopril three times a day (to treat hypertension and lessen heart failure symptoms), Furosemide twice a day (a diuretic to remove the build up of fluid in the body), and Ranitidine three times a day (to reduce the amount of stomach acid produced). We had to keep a very close eye on his weight gain (upon leaving hospital he was back at his birth weight). We couldn’t lift him under his arms for eight weeks to give his chest time to heal.

Other than that we could carry on as ‘normal’, whatever that was supposed to be.

We returned to the hospital three days after discharge to have his chest wound checked (there was a slight concern that the top of the scar was infected) but all was okay and from then on he no longer had a dressing on. We returned again a few days after that for his one week review and also to have his chest drain stitches removed – again all seemed okay and the team were happy with his

I don’t know why I thought that after leaving hospital it would be easy – I think I just thought if we could get through all of that, then we could get through anything. It turns out looking after a baby is very hard work. Ethan was generally very unsettled for months and wanted to be held closely and kept upright all the time, not tolerating being put down on the floor or in his crib. He would cry out a lot, when changing his nappy, bathing him, dressing him. Getting in the car seat or the pushchair. You name it, he hated it. His cries made my insides tense. I was exhausted, both physically and mentally and the sleep deprivation showed no sign of letting up. My anxiety was still through the roof (for a long time I had a fear that Ethan was going to suddenly stop breathing) and I felt my
mood deteriorate (as if I finally let all of the emotion of the previous months take over me).

I waited a long time before I got help (too long in hindsight), but I did finally force myself to seek the right support. My GP referred me to the Notts Perinatal Mental Health Team and the psychiatrist diagnosed me with postnatal depression and anxiety. After much thought and research, I started to take antidepressant medication (Sertraline), worked with an Occupational Therapist and tried to practise mindfulness (later enlisting on a Mindfulness Based Cognitive Therapy course).

Ethan seemed to turn a corner at around 5.5 months, and grew out of the colicky behaviours to some extent. I have also learnt an awful lot about babies since then (my experience of babies prior to Ethan was very limited). In particular I have learnt about what is biologically normal for babies versus societal expectations and how working with my instincts and making decisions applicable to our family situation is right. We breastfeed, babywear, bed-share and practice gentle attachment parenting. I am more accepting of the night waking, contact napping and general need for closeness now that I understand it so much more. Some excellent sources of information for me have been:
Sarah Ockwell-Smith (various books such as gentle sleep and gentle parenting), The Beyond Sleep Training Project, The Lullaby Trust (for safe co-sleep information), Dr Sears (high needs babies and attachment parenting).

In terms of check-ups for Ethan, we had outpatient appointments at Glenfield in January and then March. Each time, Ethan’s recovery was positive and amazingly following the check-up in March we were able to stop all of his medications. The latest appointment was in June and we were told that Ethan’s progress couldn’t be better. Our next review is coming up in December (a whole six months since the last one) and I know that we will continue to attend clinics with Ethan every year from now on. I think check-ups will always be an anxious time for us, but we must just keep strong and hope for the best each time, taking it one review at a time.

Tetralogy of Fallot: EthanEthan is now 11 months old and his wonderful happy personality shines through and he gives out such beaming smiles and giggles away and I am just so in love with him. What a heart warrior he is.

He’s become so engaged in the world around him and it’s a joy to see him develop before my very eyes. As for me, it has taken time, but I am so pleased to be able to say that I am feeling so much stronger now, and more like my true self (albeit with continued anxieties about the future).

Together, Ethan and I have made it this far on quite the rollercoaster of a journey and our bond is forged forever. I love my family to the ends of the Earth and would do anything for them. I would like to finish by thanking Chris from the bottom of my heart for being the most wonderful father to Ethan and loving husband to me. There is no way I could have got through this without you Chris.

Ethan, we both love you so dearly and we promise to make sure you feel special and loved every single day.

Find out more about Tetralogy of Fallot here