Dear NHS (That’s National Health Service to those of you not from these parts…),
I’ve been meaning to write to you for a long time to share my feelings. You and I got off to a rocky start early on in my London years and I’m ashamed to admit now that when I was back visiting family in the US and people asked me what it was like having universal health care, I only had two fairly miserable experiences (including the birth of my first son- 4 day labour, non-existent midwives, damaged bladder) to cite as examples. Then we found out that Baby J would be born with a major heart defect and while our world was crashing down around us you sprang into action.
When he was born on that beautiful September day we felt so lucky to be at one of your centres of pediatric cardiac excellence where miracles happen. Through my morphine haze I remember the doctors taking the time to carefully explain the emergency procedure they needed to perform in Baby J’s first day of life. I remember signing the consent form because there was no other option. I remember dozing and admiring the beautiful clear blue sky and view of County Hall and Westminster. I also remembering the doctor coming back to tell me in the clearest and most compassionate terms how the procedure had gone, how sick Baby J was but also sharing a personal story of his that made it seem like things would be ok. Then there were the massive efforts to get me over to see Baby J hours after my cesarean…now I realise it was because there was doubt as to whether he would make it.
I have the most fond memories of the PICU- it wasn’t a happy place or a place you would ever want to be but when I think back I feel a sense of calm and reassurance. When we first visited Baby J there we saw that the nurses had started a diary for him, documenting his little life so far. I’ll never forget how that made me feel- these professionals fighting to keep his body working from one minute to the next but using their quiet moments to write him notes that he might read as an older child- I saw this as proof that he could survive. Why would they bother writing to a child that had no chance of ever reading this diary? “Nurse” seems an inadequate description of the professional who spends their 12 hour shift keeping your son’s vital organs working until he is ready for his open heart surgery. And finds the time to pick matching sheets for his bed, rearrange his cuddly doll and keep his lips moist. And somehow manages to make two terrified parents feel like everything is under control and will be ok. Not to mention arranging our on-site accommodation, finding a fan for us to use in the scorching hot room and offering us coffee and tea from their own snack rounds.
And the doctors! I’m not sure how you recruit them, my beloved NHS, but these doctors are unlike any I have ever met before. In our reflective moments, my husband and I often marvelled at what the recruiting process must be like for these doctors- not one prima donna, not one condescending remark no matter how silly the question. I was bowled over by how much effort and care they put into this small person who teetered between life and death seemingly every hour. I was amazed by how much medical information they managed to convey to two people who were more familiar with economics and politics. But I really fell in love with you, NHS, one night when talking to our nurse and he mentioned that the cost of one PICU bed (not the medicine or doctors’ time or anything else) was £2000 per day. Yet our extended visit there was entirely free with no question of us ever having to pay anything. I can only imagine how much the 5 hour surgery with one of the country’s top cardiologists must have cost. And then I thought about what would have happened back home, in the US. How much would this have cost even with insurance? And, heaven forbid, what would we have done if we didn’t have insurance? I guess we would have had to sell our house (if we had one) and live the rest of our lives in debt because I imagine the whole course of treatment would run well over £100,000. I can’t even begin to imagine having to think about anything else than whether our beautiful son would survive from one day to the next.
I remember one day walking in to the hospital after getting some fresh air and noticing a poster about a team of doctors, nurses and other staff from the hospital who used their holiday time and own money to finance a trip to Climb Mt Kilimanjaro to raise money for the hospital. I tried to imagine anyone I know being willing to do this for their employer…nope, couldn’t do it. The day came when we finally got to go home but the great care just continued home visits from nurses, midwives, our lovely health visitor. The follow-up care for Baby J’s liver at the country’s top pediatric liver unit, the nutritionist assigned to ensure Baby J grew big and strong, the special hearing tests which are matter-of-course for NICU babies. Then there was the day I got a call from our pharmacy asking if I would like Baby J’s special formula delivered since it comes in glass bottles and is very heavy.
My dear NHS, I seriously under-estimated you. It’s true- you have some areas that need improvement- but who amongst us doesn’t? You saved our little boy and helped us preserve our sanity in the process. All without asking anything in return.
Posted in The Heavier Stuff
Tags: Baby, Congenital Heart Defect, NHS
She goes flying... 