Health and Money (and a Baby with a Fever)

The Next Family

By: Stacie Lewis

cost of having a special needs child

This is my last post for The Next Family. I want to thank the publishers for asking me to include my posts in the first place. Like the other “next” families on this site, it is very rare to read about disabled families. I no longer have time to post here, but if you want to continue to read about us, you can on my web site


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 per month (about $190) towards National Insurance and nothing else. When I lived and worked in America, over ten years ago, I paid over $200 per 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.

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 and American Medical Association.


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