This week has been a tough one for May. In some ways, it was a very normal week in terms of illness and a baby. Sleepless nights. Struggling to get food and drink down her. Lots of tears (from her, but I felt like it at times).
May received her MMR and flu vaccine last Friday. Her fevers started on Saturday. Her seizures on Tuesday. Her first full meal again on Friday.
She’s lost a lot of weight, which is worrying. More worrying, her seizures reappeared, mainly disturbing her sleep – four so far tonight. Fingers crossed, once she puts a bit of weight back on, they will go.
Illness, even one as minor as this, is always a reminder of how close we came to losing May to begin with and how tenuous our hold on her health is today.
But, one thing we do not worry about is how much it all costs. Before May’s birth, I sometimes entertained thoughts of moving back, not permanently, but for a year or two so that I could reconnect with family and show May what being American is all about.
That fantasy, like many others I had before I knew her, vanished after her birth. But, in this case, it vanished because I knew the reality of living with a severely disabled child in America would bankrupt us.
Firstly, May has a pre-existing condition. We could get insurance, but the premiums would be astronomical. If they weren’t, I imagine the deductibles would be.
Instead, I live in the UK where I pay £121/month (about $190) towards National Insurance and nothing else. When I lived and worked in America, over ten years ago, I paid over $200/month, plus, a deductible whenever I visited the doctor or had an x-ray or anything, really.
We never worried about the cost of May’s injuries. Furthermore, we were saved the additional misery of begging an insurance company to cover tests they didn’t want to.
I was reminded of this when I read the article ‘The High Cost of Healthy Babies‘on BabyCenter this week.
So, what would May’s first six-weeks of life have cost?*
($3,500 x 40 days) 24-hour Neonatal Intensive Care Ward
($2,625 x 2) Brain MRIs
($1,100 x 5) Brain CT scans
($1,100 x 2) lumbar punctures to draw up cerebral spinal fluid
$152,950 in total (about £91,770)
I assume here that cost of a 24-hour stay in the Neonatal Intensive Care Unit would include medicines, blood tests, oxygen, food, diapers, heart monitoring, neurologist’s assessment… of these and many other things, May received many times over.
I think there will be some, particularly some Americans, who may read this post and think, “Ah, yes, but if May had been born in an American hospital, she would have been born healthy and, therefore, never would have racked up such bills.”
I could point to statistics that show America’s health care system is worse than Britain’s. But, the truth is, I think if May had been born in any other hospital, or by any other team of midwives, or on any other day, she would have been fine.
I think that is a “what-if” conversation for another blog. For now, I’ll just take comfort that I live in a country where May does, at least for now, receive all the treatment and care she requires, and these treatments do not break her family financially.
*Costs taken from www.comparemricost.com and American Medical Association.
Feel better May. Here some people split up the MMR into separate doses as it is a hit to the body. I hope May’s seizures stop again real soon and she recovers her weight loss. Here in the US there are so many services May would have been put on SSI Disability and then gotten all free services at top hospitals all over the country just as you do in UK.
That’s great information Madge! I wonder if it would have covered her first six weeks though?
That’s a horrible thought, that May would’ve been born healthy in a different hospital. Was her condition a result of doctor error?
Stacie,
The hospital signs you up at birth if there is a problem. Also, children’s services here in California offer so many programs for children under 3 it amazes me and it matters not what your income is. But that all might change with new budget cuts.
My son (20 months old and diagnosed with CP at 6 mnths of age) was born in California, ElCamino hospital. He stayed in Elcamino NICU for 7 days and then was transferred to NICU at Stanford Children Hospital where he stayed for a 3 weeks. At 3rd day of his stay at Stanford we checked his hospital bill, it was 77,000 USD .. I almost got a heart attack because there was no way we could have afforded that. But our insurance (through my husband’s employer) was very good and we didn’t have to give a single penny. At the end of it all we only had to pay for his ambulance trip from Elcamino to Satnford which we got reimbursed. We got to know that his total hospital bill was over one million dollars and insurance had to settle 50% of it.
Our followup trips, therapies, medicines were covered through insurance and we paid co-pay ($25 every therapy visit and $20 every medicine and $40 every specialist visit).
I don’t know much about State offered services but all the forms etc we got from hospital for services, there was a income limit for qualifying for the services and we cudn’t get in in any of those. We did get in Early Intervention program california offered for 0-2 age but sorry to say it sucked (all the budget cuts etc were happening that same time). My son was seen by a questionable doctor (who was kind of wearing a costume party outfit) for 1 hrs in a dingy looking office for assessment. He was put on the prevention list meaning he will be checked by our coordinator every 6 mnths to see if he qualifies for their services. I never heard back from them anyway. My son did get some services from CCS (California Children Services) for PT and OT, sorry to say but their services sucked equally. Therapists were over worked, maintained their own schedules (in diaries), got cancelled rebooked so many times that I got fed up. It is hard to get a baby out of schedule (nap times, meal times) so as to get to an appointment only to know 15 mins before the appointment time that therapist is not in today so ….Ugghhh. On top of that almost all the therapists I dealt with were so opinionated about parenting specially I felt so being a new mom. To sum up I dreaded going to them and my son did’nt like it either, I continued going to Stanford for tharpies, paid high copays but didn’t mind as they were happy young and not judging!!
I moved to UK when my son was 11 months old (you may remember Stacie, I emailed you with some questions in Apr 10). My son is getting PT regularly but we are 1 year long waiting list for OT and speech therapists are so busy here they see him once in 3-4 months, despite the fact he doesn’t say a single word and have a hard time chewing anything. Our consultant here doesn’t think he is disabled enough to get frequent services. She was even bold enough to say me on my face that I should feel lucky that he is able to sit on his own and not like other kids who are in wheelchairs. I couldn’t say anything and cried for half an hour in the bathroom. Every professional I dealt with here gave me grief about how my son is getting services for FREE… no body cares that my husband pays more than 300 pounds towards the fund.
Sorry for my rant Stacie … I am so tensed and worried for my boy’s care. I got off the topic.
You take good care of May… she is beautiful!
S
Surbhi – I can definitely relate to your dismissive doctor conversations. I can’t tell you how many times I have had medical professionals at all levels say to me, “The thing is, you probably don’t understand how the NHS works…” It is very patronizing, but more than that, infruiating because their decision can help or harm your child. It is very tough.
I will add that in the UK, there is a post code lottery. My borough of Lambeth in London provides physio, OT, etc, but not on a weekly basis. May’s problems are pretty severe so we do see people with a fair amount of frequency, but as you will know, cuts by the government mean that even those things are going to be pinched.
Neither the US or the UK system works as well as it could. As far as the UK system goes though, I do find that strong words and persistance pays off in the end (though it does sometimes take a lot of time). Sorry to hear that they aren’t taking your son’s needs seriously.
Yeah, with SSI and some of the better policies of health insurance Rya’s medicine still runs 280 dollars for a 30 day supply.
Add in 30 dollars a visit for a general physician, 60 for a specialist (all but one of her physicians are considered specialists), zero SSI/insurance coverage for hardware like braces, walkers…. full cost for botox that she gets every 65 days.
We hover near bankruptcy in the best of months. We fall into the all-too-common area where we make too much for full SSI and not enough enough to cover basic costs.
On paper we are middle-class, yet routinely decide between meds and gasoline. (meds always win)
The problem here is that unless Obama care stay in place limits on insurance will stand and when you spend so much money your insurance max’s out and you have to go to the state services. Obama Care takes away these limits.
We were also very unsure about how soon our insurance will max out.. it had 2 million max out and we were almost half way there at his 10 months age. Bringing up a child with additional needs is very scary path wherever in the world you are, specially when other people’s decision can make a difference.
S
[...] kids with CP are more expensive (regular trike $150, adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health [...]
[...] kids with CP are more expensive (regular trike $150, adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health [...]