A Moral Dilemma

6/3/2012

Lillian has been making pretty steady progress.  She has been extubated and taken off the respirator.  She is currently getting additional oxygen through continuous positive airway pressure (CPAP).  She has been tolerating her feedings and is close to receiving all of her calories from feedings.  At the current rate she will be able to have her IV removed tonight.

Lillian and her CPAP. Don't worry her nose won't stay like that.

As for Evalyn let’s start with some good news.  Her PDA is closed and shows no signs of reopening.  Evalyn has been largely stable on the oscillatory ventilator.  She has been increasing her feedings as well and making some minor improvements.  However, she has been on the machine since Thursday and the ventilators can cause some harm to their lungs, of course the harm is much less severe than the harm done by not using them.

Mom, Dad and Evalyn during a rare moment when the incubator was open

The steroid question is the core of the moral dilemma.  We were approached about the study again for Evalyn.  Considering Lillian’s recent progress she doesn’t appear to be in need of steroids at all.  Evalyn, however is looking more like she will need steroids.

A little more background about the steroids would probably be helpful.  Steroids have long been known to speed the development of the lungs in premature infants.   However the steroid most commonly used, Dexamethasone, is also known to increase the risk of abnormal brain development.  For obvious reasons doctors are hesitant to use Dexamethasone, as are we.  Some recent research suggests that hydrocortisone can provide the benefits of Dexamethasone without the adverse effects on brain development.  The studies performed up to this point have been small so they are looking to field a large scale study (800 participants). 

So what’s the moral dilemma?  If we enter Evalyn in the study she will receive either the Hydrocortisone or a placebo.  If the treatment doesn’t work and she doesn’t get better on her own we will have to go to the Dexamethasone.  The problem is there is only a 50/50 chance that she will receive the Hydrocortisone.  As an alternative we can skip the experiment and give her the Hydrocortisone anyway.  While the research on the Hydrocortisone is limited it is suggestive enough to encourage the medical community to move to large scale trials.  There is little disagreement on the potential harm related to Dexamethasone.  While I really want to participate in the study I also really want to avoid the Dexamethasone.  The Hydrocortisone could make this possible, but if we enter the study we have to be willing to take the chance that Evalyn won’t get it.

Ultimately we decided not to enter Evalyn in the study.  We are going to give her a little time to get better on her own.  If that isn’t happening we will go with the Hydrocortisone followed by the Dexamethasone only if absolutely necessary.

You’d think this simple plan of action would be easy to implement.  Unfortunately we are finding that nothing is simple with girls of this gestational age.  The slow rate of Evalyn’s progress isn’t a clear indicator that she is making the progress necessary to get off the respirator on her own, but it also might suggest that the steroids aren’t necessary.  Waiting might seem to be a good idea if it weren’t also known that there is a certain amount of harm done by the respirators themselves.  It seems that there isn’t enough known to establish any clear guidelines.  The doctors have even told us that if we want to start or wait they will defer to us.  If they have a tough time making that decision how in the world are we supposed to do it?

I wish I could give you a nice clean resolution to that bit, but there just isn’t one yet.

Evalyn resting peacefully

Transfusions are common for babies this young; here Evalyn getting some of Dad's blood

In other news my parents have finally gone home after being here for just over two weeks straight.  To borrow an expression from cycling, that’s a long pull.  Believe me, my boys are going to make sure it’s a headwind.  We are grateful to them and Heidi’s parents who were here before.  We are also grateful for the meals, babysitting, prayers, readers etc.

I also managed to sneak a picture of Heidi's compression hose. It's just an ankle, but I'm taking great personal risk posting even that.

Compression hose . . . Yeah!

Thanks for reading