Wednesday, January 21, 2009

The medical risks

A commenter from my previous post about allergies brought up a valid question that I'd love to answer.

Her question was something like, "Don't you feel that bringing your son with a serious heart condition and severe allergies to a third world country is dangerous?"

I think that's an excellent question and something we've given a lot of thought to, as it is not the first time we've heard it. We actually listed the question in the FAQ's on our website because it is something people are concerned about. And we get that. I appreciate people being concerned for our children.

So I will start with the heart condition-- I could give a lot more detail, but I will stick with what I feel like gives the whole story without going into all the medical jargon. (Which parents become an expert on when their kid is sick! :)

As many of you know, Josiah was born with a severe heart defect called Transposition of the Great Arteries (or sometimes called Transposition of the Great Vessels.) In basic terms, it means that at birth the two main arteries coming out of his heart were flip-flopped. This meant that oxygenated blood was not able to get to his body. Without surgery, it is always fatal.

It was a terrible experience for us. But I will never forget the doctor (on the night he was diagnosed) saying, "You guys kind of hit the jackpot. If your kid has to be born with a severe heart defect, this is the one you want." Now I know that sounds silly, but it's true, because there is a DEFINITIVE fix-- correcting the "transposed" vessels to make a complete circuit. This happened for Josiah on day 3 of life. He had open-heart surgery that was one-hundred percent successful.

Since his surgery, he's been followed by top surgeons and cardiologists at Duke Children's Hospital and they've all said the same thing... Josiah is the "best case scenario" for this surgery. He has no remaining problems from the surgery. It is considered "final." At this point we need to have follow-ups with a cardiologist once ever 3-5 years. All of his tests have shown perfect heart function.

Now, with that being said, this was a huge deal for us. So we talked very candidly about our thought of a move with Josiah's cardiologist at Duke before we made our decision to move forward with a move to Haiti. We braced ourself because in this age of litigation, we knew he'd probably advise against it, but he did not.

He told us that Josiah is healed. He has no restrictions what-so-ever and that we should treat him the same way we'd treat our other children. When we explained our thoughts of a move, his exact words were, "Cool. Go!" He is willing to keep doing his checkups for him while we are on furloughs, but he said that there are qualified doctors to treat him all over the world and this surgery is a "non-issue" in this decision-- he has NO increased risk of any heart-related incident or injury at this point. (No more than any other child.)

So we've really come to a place of peace as far as his heart is concerned. There WAS a major life decision that we did make in relation to Josiah's heart condition, and that was to not have any more biological children, as our risk of having a child born with a heart defect is now doubled. We have taken permanent measures to ensure this is the case, as we are not personally comfortable with the thought of another pregnancy/birth in Haiti. (Which, again, is our PERSONAL choice. As my sister, Melody, has said to me with great wisdom, "God gives people grace for different things." There are plenty of people who are comfortable with pregnancy and even birth in Haiti, and I (IN NO WAY) wish to suggest their decision is not the right one for them. This is about what God has given US the grace to handle.)

Now, the allergies.

Yes, honestly, at times that does concern us. But I am concerned about that in the US as well. I think food allergies is not something to be cavalier about. BUT, I also believe that we will be able to set up our lives (as we have in the US) to minimize exposure and to deal with any potential problems we encounter. (Carrying Benadryl and Epipens, etc.)

Additionally, here is another side of the picture that is not often talked about with this candor but it is reality. Because we are Americans, we WILL have access to more consistent and higher-quality healthcare than most Haitians. It's very sad, but it is a reality. We have access to and relationships with multiple American medical professionals in Haiti, as well as the resources to get to the US within a short amount of time if necessary. We have relationships with multiple individuals who own/operate private helicopters/airplanes, etc. We have already begun membership in a medical co-op that will cover medical costs should they arise (whether they are incurred in the US or Haiti.)

We do understand there are medical risks to living in Haiti. However, we're doing all we can to mitigate these risks. And for whatever reason, God has given us the grace to accept and feel comfortable with this level of risk. We love our children dearly and would never intentionally put them in a situation where we felt we were going to expose them to accute danger.

I remember reading "The Poisonwood Bible" a few years ago. Without going into too much detail or spoiling the plot-- It's about a family who moves to Africa to become missionaries and the father cares so much about his "mission" to "save souls" that he neglects his own family. It is a great, (albeit heartbreaking) read. Our "mission" that God has called us on IS our family. We are going to Haiti to build family. I think we'd be entirely missing the point if we didn't realize there are risks. But because we realize there are risks, we are able to plan for them and build a community around us who has "got our back."

I think that was an excellent question.

We would welcome any others you have about our move. It's likely we've already answered them in our own minds, but if not, you will be giving us the opportunity to explore them and plan accordingly.

Finally, Nick has some additional thoughts about this issue from his "Dad" point-0f-view, now that I have given you mine from my "Mom" point-of-view. He'll get to that shortly. :)

6 comments:

  1. This feels like it will be a silly question...but how much variation in diet are you going to have in Haiti? When Josh and I were there in 2005, people were happy to get rice and beans once if not twice a day (I DO realize that it could be vastly different at your children's home). Couldn't you just get Josiah an allergy test before you go, and make sure he doesn't come into contact with those foods?

    I realize that may sound incredibly simple and not taking food allergies seriously. I don't mean it that way, I assure you. My husband gets anywhere from extreme acne to boils on his skin depending on what "bad" thing he might eat.

    Rebekah

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  2. We have had Josiah food allergy tested and the plan is to do it again (more extensively) before we move.

    We will have a more limited diet there and will eat more foods made from "scratch." There will be very limited occasions for eating out.

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  3. As an RN I just wanted to agree with what Gwenn has said about her little guy's condition. Transposition is horribly scary, not only for the parents but for everyone in the room at the time of the birth. I have cared for several families with the same diagnosis and some have not done well at all. That being said once the surgery is complete and the child is healed he really is no different than any other little guy his own age. If he was born with another type of condition, let's say an electrical problem of the heart (SVT's), it would be very different as many times those problems can never be fixed only managed.

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  4. I know that when God calls us to a specific purpose or place, he equips us... so I trust that goes for the health issues, too. Your calling there has been so sure that I have no doubt in my mind that God is going to take care of all the details.

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  5. I you will be fine... God has a plan for you, and you are going forward with it... and he will protect joshiah :)

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  6. You all are an inspiration: thoughtful, prayerful, funny, sincere, compassionate, and just "plunge in and do it" types. Thanks for sharing your thoughts on how family, mission, health, and priorities all are held in tension in discerning God's call.

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Hey y'all. Allowing comments now after a long time of not. Please be respectful.