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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.

 

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