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Desperation or Choice?

Posted Oct 04 2009 11:13pm

When your child gets sick, you will do just about anything to help them get better.  Sometimes this means watching them suffer through painful treatments and difficult procedures.  But, you do it in the hopes that after its all over, they will be better and no longer have to suffer whatever condition brought them to the hospital in the first place.  Sometimes, the treatments have side effects that cause equally bad health problems.  For example, I have met two children in the last three months who have contracted cardiomyopathy due to treatments for leukemia.  The medicine did away with their cancer, but in the process, it caused their hearts to enlarge and stop working well.  One of them contracted it when she was 2 and did fine on medication until earlier this year, when, at the age of 15, she had to have a heart transplant.  One of them is only two right now and just found out about the cardiomyopathy.  She is in remission and the cardiomyopathy seems to be controlled with the medication she is on for the time being.  But, it is yet another blow to a family that already had too much pain and illness in their young lives.

So, what do you do?  If you know that the medication can cause side effects (many of the medications M is on have some possibly serious side effects, including, ironically enough, injury to the heart itself), do you choose to not give it to them.  Of course not.  First of all, in most of these cases, they would not survive without the medication in the first place.  Second of all, with the medical advances being made, we can all hope that by the time serious problems arise, they will have solutions for those problems that are less invasive and less injurious then at present.  And hope is hope…even if sometimes that hope is tinged with fear, we choose hope.

So, it did not shock me to read in a Times article that families in Britain have begun to seek unregulated and untested stem cell treatments in China.  It is easy to get caught up in the hope, and lose sight of the possible damage.  And, at times, you wonder how much treatment restrictions are based on marketing decisions versus safety (see my prior post where I discussed the profitability gap) and how much is based on actual safety.  I know that Europe is a little less arduous in its regulatory control and cost of bringing items to market (hence the Berlin Heart being available for children there but not yet cleared in the US), but I’m sure there are still some issues with cost-benefit analysis driving medical advances.  Its just hard to know what to do, who to believe and how to proceed.

I think having a doctor you trust in these situations is of the utmost importance.  I know when I was going through the worst days with M in the hospital, I always felt like her transplant team had HER best interest in mind when making decisions.  I never felt like they gave me false hope, but I also felt like they provided me with fair assessments and all possible alternatives.  Because they are asking you to make life and death decisions based on their information, it is key to have people you totally trust giving you that information.  I think it would be worth changing doctors and even hospitals if you didn’t feel that level of trust.  Too many people stick with medical professionals because they feel “stuck,” not because they trust them.  This must be a horrible place to be.

We were lucky to end up where we did.  I had only a couple of incidents when I felt like treatment could have been better for M, and they were really driven by individuals and were remedied soon after.  I am so thankful we had and have the team of doctors and nurses working with us that we do.  I can honestly say that I can’t imagine having had a better experience in this process – its a horrible experience to have, but it is made so much better when you are surrounded by people who you can see really care and are willing to be there for you and your child.  It may be difficult, but if you are someone who has a sick child, don’t just settle for a doctor or staff you are not comfortable with – look for one that you feel is working and caring for your child and your family.  Its hard enough without additional stress.

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