Hemophilia, Is It on the Rise, Or has it Gone Undetected?

When our grandson was only six months old, he was teething and his mouth would not stop bleeding. Local hospitals just kept sending him home thinking this is a first time mother who is nervous, they kept telling her it would stop, the bleeding didn’t stop. After several trips to two different hospitals, a lot of internet searching and some strong insistence by his mother, she got them to test him for hemophilia. They had to send the blood tests off to a lab because their lab didn’t test for such things. They discovered he did have severe hemophilia, no family history on either side of the family, and since doctors think it is too rare to test for, this lead to a rush to the closest hospital that treats hemophilia, a helicopter flight for treatment for him with his mother, while his dad had to drive the five hour trip. They did tests, they surgically inserted a port to give him medicine to stop the bleeding and once they determined the kind of medicine he needed they sent him home. So now there were two very scared parents, and one sick little boy, three sets of grandparents, aunts and uncles all very worried. But the hospital had set them up with a Hemophilia Nurse to come to the house to give him his treatments daily.

It wasn’t long and his port began to have problems, he had to be taken back to the hospital. A young family with little money was now rushing back across their state to the hemophilia ward for more surgery. Remember any surgery causes bleeding and this is so dangerous in a child, whose blood will not clot, but the port had shifted and he was bleeding internally. Luckily several family members chipped in so that they had a working car, gas money and money to live on while there, as well as pay their bills while dad was off work. It was at the hospital the parents met other parents who had been in similar situations. No family history of hemophilia and none lived near the hospital when their child was diagnosed. Some, like our son and daughter-in-law, could not afford to be off work to accompany their child but did so at peril of losing everything. Every bleed is potentially life threatening. Every treatment is very expensive, as are the hospital bills.

We learned there are many forms of hemophilia and some in women are never diagnosed because doctors never think to check. It is a genetic mutation disease, and usually strikes males. In our grandsons case they had no insurance and so the parents could not afford to be tested, they showed no symptoms. So they cannot take the chance of having a second child. 

This is the kind of disease that once diagnosed without the new Healthcare Reform Act making insurers accept pre-existing conditions in a couple of years, they have to remain on state healthcare all their lives.

It is assumed that the disease is passed from mother to child. However I have questions about this, and not a single explanation in the research I have read explains why so many children seem to have parents with no symptoms. It is another of those questions where I keep asking “are you sure the grandfather’s exposure to Agent Orange had nothing to do with this?” His first wife had multiple miscarriages, a still birth, one child born with only a partial stomach that went undetected and died in a few weeks, and the son that lived was born prematurely and his lungs were not developed. I also had two miscarriages. All of the research being done on Hemophilia is centered around the old belief that it had to come from the mother, but since Agent Orange can cause other abnormalities, diseases and cancers in the children and grandchildren of Vietnam vets, and there seems to be an increase in cases in the last twenty years, I still keep asking.  The company who made Agent Orange still produces many herbicides used by homeowners, cities, counties and agriculture. It has the same ingredients in them just at lower concentrations.

See: http://en.wikipedia.org/wiki/Agent_Orange. I am looking for more information and asking more questions all of the time, it seems like more than a coincidence to me.

Because of their experience of the many rushed trips to the hospital, and after talking to the nurses who came to give our grandson his injections they moved closer to a Hemophilia Center, a hospital that has the specialized care needed for this disease. But that took finding a new job and a place they could afford as close to the hospital yet in a safe neighborhood as they could find. It also lead to our kids, (I am so proud of them for this), starting up a Non-Profit to help other families who make the mad rush to a hospital, have no money or personal care items with them, and sometimes even don’t have on clothes that fit a change in weather. Below is the link to see their story and where donations can be made.

Their non-profit is: http://www.thedevynthomasfoundation.org/. They help many families who are referred to them by the hospital and the nursing agency who does the homecare visits. There are also links to agencies to help families to learn about hemophilia and how to find treatment centers.

If you or your child has a problem with blood clotting, long term bleeding, do ask to be tested. There is help available once it is diagnosed. 


Our Grandson is now 2 1/2 and has had many scares with several visits to the hospital. Keeping a toddler from bumping himself is quite a job, and nearly impossible because in all other ways he is an active normal 2 1/2 year old boy. He gets his daily infusions and often several a day when a bruise becomes a major bleed and a limb or joint swells to 3 times its normal size. we never get used to the gut wrenching fear of a bleed, knowing the damage it is causing his joints. This will be a lifelong struggle for all involved.