Last year, one of my oldest friends – whom I’ll call Ben – and his wife had their first child.
All their ultrasounds had been fine, but he was born with a small but critical section of his bowel missing; it’s the kind of thing that doesn’t show up on an ultrasound and it’s the kind of really, really nasty shock that you don’t want or expect when you have a baby.
Ben has kindly agreed to write for me about his experience of having a child in critical care – and of his time at Great Ormond Street Hospital. He is quite a formal guy so I suggested he might find it easiest to write via a list of tips.
Over to Ben:
- Write it down and get it in writing – before you meet the consultant write down a list of all the questions that you have, when they see you they will have an entourage of anything up to 5 other doctors and nurses, this is not conducive to relaxed chatting. If there is not time for them to answer all of your questions on the spot get the email address of their secretary and email them. Many doctors and some nurses are surprisingly bad at introducing themselves and explaining their job titles. Consultant, registrar and senior house officer mean something to them but nothing to you. Write down their names and their job title. If they tell you anything you want to remember don’t try to remember it, write it down. You are entitled to a copy of all the notes, make sure you get these, you may have to ask many times. As the months turn potentially into years of treatment you will want your own copy of all of this.
- Care is 1st Class, admin is sometimes worst class – the expertise, skill and care that the doctors and nurses offer is genuinely world beating, the number of ward names in Arabic and Greek hint at the source of some of the international patients, but the follow up communication and administration can be surprisingly patchy. Do not be bashful about ringing, repeatedly if necessary, especially if the consultant has indicated a timeframe for a follow up appointment and a date for that just isn’t materialising.
- Getting in and getting out – if your child is admitted, and admissions can range from overnight to literally years, your one single focus will be getting your child home. So much so that once your child is home you may be unclear about what happens if they need to go back. Unfortunately if your child takes a turn for the worse you can’t just turn up at the ward asking to be let back in you will almost certainly have to go through the maddening process of taking your child to your local A&E to be admitted from there. If your child requires aftercare at home make sure you have all necessary supplies and instructions IN WRITING. If your child requires strange medicine don’t let your pharmacy fob you off with claims that it can’t be sourced, they do this in the hope that you will return to GOSH to collect expensive medicine that they don’t want to dispense.
- Think of a number and double it – when your child is admitted one of the first questions you will ask is how long they will be in for. This is a nightmare question for doctors as it is generally impossible for them to say. You will often get an understandably optimistic estimate. Double it immediately for all planning purposes. If the child is out within the estimate you will be ecstatic. If not you will be prepared.
- R&R – unless your child is very gravely ill GOSH only allows one parent to stay overnight. If you’re a father reading this don’t let the mother be that parent every night. If the nurses say they will keep an eye on your child while you go for a walk, to the shops or for something to eat do what they say. There are some prisoners that see more of the outside world than parents in GOSH and it is no good for you or your child if you develop cabin fever.
- Respect the dark side – as well as a bewildering array of medical job titles you will learn to differentiate the seniority of nurses by their tunics. Basically the darker the more senior. If you have a nurse wearing a black shirt in your child’s room you have basically been visited by the queen of nursing and something very difficult is being done to your child or your child is being very difficult.
- Help – there is so much help of every conceivable variety on offer: accommodation, transport, education, benefits, supplies, community referrals, psychological, religious. You name it GOSH can help with it but you must ask for it. Whether you are religious or not, Christian, Buddhist or Jew take a minute to visit the hospital’s chapel. It is a neo-byzantine jewel and has offered solace to some very anguished people.
- Coffee – one of London’s best coffee shops is situated right opposite the main entrance. You may be disinclined to accept their loyalty card. Don’t. You will be returning many, many times.
- Good luck – it won’t feel like it at the time of admission but your child is very fortunate to be there.
If you would like to make a donation to Great Ormond Street, you can here.
Esther that is such a lovely email to send out today x
😭😭😭. Ben. Esther. Thank you. What a fantastic article. My aunt was a sister at Great Ormond Street. I always knew she was a bit of a legend but this really cements it. Ben I hope your little one is now on the mend x
Tom B says
This is seriously seriously good advice
Thank you Bob and Esther
Esther this is brilliant. A much better Valentine’s Day article than all the ones in the paper filled with pink and red tat (although I’m not judging if you’re also doing one of those). I’m pregnant and it brought a tear to my eye, despite the gloriously unsentimental tone.
I hope all is well now with them. A family member was in intensive care after he was born and it is so nightmarish, you really need practical stuff to hang your hat on to get through it. My son was in hospital, thankfully only for short periods, several times in his first year and it took me ages to be able to listen to the Ceebeebies bedtime song after, as it played every night in the ward somewhere and the line “we’ve had so much fun today” in juxtaposition with the poor babies going through it was unbearable, but at the time it was also a much needed piece of normality. Nice idea for Valentine’s Day.
Brilliant and informative. Hospitals can be very frightening. I remember being tokd by a rehistrar I needed chemo. He read through the totally incomprehensible medical notes(to a non med person) completely ignoring the fact I was weeping. (it was such a shock). Such arrogance!
Yes med staff can do a wonderful job but their communication skills and empathy can be sadly lacking.
Sterling advice. I very much relate to and agree with what is written here. My second son was in neonatal intensive care for some time after he was born (prematurity and heart issues) – the bit about getting out for a walk or whatever when the nurses tell you to is spot on. They can spot all the signs – take their advice people! I also had a wry smile to myself about the coffee shop loyalty card – made me recall the strict “white baguette/caffeine” diet my husband and I lived on at that time…! Sending all best wishes to your friend Ben and his family, and to everyone else out there with a sick child. One of the most perspective-providing experiences one can go through 💕
Meant to say love this post, brilliant advice, all the best to Ben and family.
All the very, very, very best to you.
Erin N says
This is excellent. Thank you.
Really great advice – thank you so much. Hope things are on the up now. My son had a bowel condition (annular pancreas) which was too teeny to be picked up on ultrasound but he was in Oxford Children’s Hospital for 2 and a half weeks over Christmas 2010 and had surgery when he was 6 days old. We were fortunate that he recovered so quickly – it could have been much worse.
Ronald McDonald House were great – they allowed us to have a room even though we were fairly local but with snow and our daughter being just 3, we were able to spend Christmas Eve together. Ask for that as early as possible as they may not have a room initially but can bear you in mind. Write things down…..the surgeon who operated drew a little diagram which we still have- helps make sense of it.
We were discharged on Boxing Day and in the end it was quite sudden – I felt very vulnerable suddenly being at home without the doctors and nurses there – it was all fine but i was a bag of nerves for the first week in case anything went wrong when GPs etc weren’t around.
I think also don’t be afraid to get help if you need it to process what’s happened – talk to someone/get counselling. I wish I had. It was a very difficult time – am sure if something had been picked up on the Ultrasound it would have been tough as well but the combination of hormones post baby, emergency surgery, genuinely thinking he was going to die, explaining it to our daughter and parents, trying to keep milk going even though it all had to be donated…..it was just such a shock – definitely the first 48hours were the most difficult I have ever had – even though I knew at all times that the doctors were great and we were in great hands. I struggle with anxiety anyway but this definitely made it worse.
Lovely idea. Hurrah to the wonderful NHS and their never-failing care and expertise, we’re so damn lucky to have them
Jo Dodsley says
I totally echo this. Sam was born with SCID and although now 2 years down the line, it’s all good, at the time a move to Newcastle from Cheshire for 4 months, leaving our 5yo behind and dealing with a bone marrow transplant was beyond stressful. I would add:
Take your own bed linen if applicable. Hospital laundry starched and noisy and cold
Write a blog or a diary or something. It is cathartic.
If someone offers help, take it
Ask every stupid damn question twice, three times till you understand it. Otherwise you never will
Make time for you and your partner bcs this could break you and you need to care for each other as much as your child
Excellent advice,especially regarding getting out of the unit/ward for a bit to avoid cabin fever. The nurses were brilliant in offering to look after my son when he was admitted to hospital at 5 weeks old. It was a lifeline to have some time out in the fresh air, or even in the hospital canteen, just to take a breather.
Thank you for sharing – hope little one on the mend
The best article for Valentine’s Day. Or any day, in fact.
I love GOSH-they’re amazing. All the very best to Ben and his family, and to all the little ones and their families who are having a tough time.
Brilliant post and so true. 😘