This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The second of our contributors is Pam Mellen:
I am a mother to two daughters, Gwen (aged 3) and Rosie (8 months). My husband and I became carers to Gwen almost overnight, suddenly facing the inevitable struggles of new parents alongside managing her health needs.
When Gwen was born, we thought everything was fine. Less than 24 hours later she was diagnosed with a congenital defect, requiring urgent life-saving surgery. Her conditions (tracheoesophageal fistula and oesophageal atresia, aka TOF/OA) left her unable to swallow and with air slowly filling her stomach. Those first few weeks were a blur, with surgery and a slow transition from IV to an NG tube to oral feeding. We spent at least two hours in the car each day, driving to and from the NICU to visit her.
In many ways we were lucky. She only required one surgery and minimal additional interventions – some children with TOF/OA require months of hospitalisation and multiple procedures. She had no additional defects – about half of children with this condition have one or more. However, that didn’t mean that she was a typical child. The repaired section of her oesophagus is very narrow and lacks the ability to properly push food down. This means that food can become stuck – commonly called a “stickie”. Another side effect was severe reflux and problems with her repaired trachea, leading to a high risk of chest infections and a barking cough.
Feeding was incredibly stressful and continues to be our biggest challenge. As a baby, Gwen was combination fed due to low supply, which meant experimenting to find a safe bottle for her formula – ordinary bottles released milk too quickly, causing it to become stuck. Later, when weaning, we had to be extremely cautious about giving her only pureed and dissolvable food, all in small amounts. She still got routine stickies, and progress to thicker and lumpier textures was slow. Mealtimes were fraught – she could get stuck on foods she previously tolerated, and we spent a lot of time regulating her eating. Inevitably, stickies happened despite precautions, so we had to support her to cough food up, or down, always with the background fear that this time it wouldn’t come out, and we’d have to take her to A&E. Plus, Gwen increasingly wanted to self-feed and fought spoon feeding. However, she simply could not tolerate table food like other children her age – she primarily ate pureed food until she was well over a year old and continued to have purees routinely until she was over two. That meant well over a year of preparing and freezing purees, trying to get the right consistency, quantity, and nutritional balance, then fighting to get her to finally eat.
Another challenge was that with each medical appointment – and there were many – we had to weigh up whether both parents should attend. I was on maternity leave for 6 months, and my husband had shared leave for the following 3. There was not always a clear line around when an appointment was important enough to justify both parents attending. When we both returned to work, we had to work out who would be arranging time off for each appointment – if not both, then who? I felt the pressure to be present at all appointments – not from my husband, who is a fully involved dad – but, more nebulously from the sense that a caring mum would insist on being present at everything, regardless of whether it was strictly necessary. Combined with having a much more understanding workplace than my husband’s, it was a difficult balance to strike.
In her first year and a half of life, there were multiple A&E trips, one re-hospitalisation, one ambulance ride and uncounted stickies. The last were especially challenging when in public, trying to manage Gwen’s condition while attracting stares – feeling like I should reassure people that no, she wasn’t sick and vomiting and no, she didn’t have anything infectious.
External support was extremely limited. While we have wonderful families, distance meant they couldn’t offer day to day help. I’m an immigrant, so my family lives overseas, and my husband has no local family. His parents made regular trips up to visit – my mother-in-law in particular provided extensive emotional support – but practical assistance was by necessity only occasionally available.
The good news is that things have gotten better. As Gwen grew, her oesophagus grew. Combined with learning self-management, she expanded her ability to eat so that now, at 3 and a half, she can eat almost everything a typical child can. She still gets stickies several times a week, still doesn’t necessarily want to have a drink to clear them but now she can tell us what’s going on and is starting to understand how to help herself and to talk about her “tricky food pipe” to others.
Our next challenge will be the transition to a new nursery. Gwen was scheduled to begin the week that the lockdown came into effect. We have a written care plan, but we can’t be sure how well the staff will cope. We’re also worried about how other people will react to hearing her cough. The “TOF cough” has improved but hasn’t gone away and in the current climate any loud cough is likely to attract attention.
Each step has brought new stresses and worries. However, I feel grateful for my happy, independent little girl who takes everything in her stride, and fortunate at knowing that her complications should continue to decrease over time. Finding out that my child had a life-threatening medical problem was the most frightening and upsetting experiences of my life and caring for her has been undeniably stressful, but now it’s become so much our normal that it’s hard to imagine it being different.
Pam Mellen
Project Manager, King’s Digital Lab