I have a feeling this is just another round of a million tough decisions that we will face in the coming months.
Assuming that we pass the next two rounds of genetic testing, we have to start looking at hospitals and surgeons. HLHS is seen in about 100 babies per year. The local children's hospital is pretty highly rated for the Midwest. But the BEST hospital is CHOP in Philly. Our hospital sees maybe 4-6 of these babies a year, while CHOP maybe has 20-30. With more cases comes more experience and higher success rates for the heart surgeries.
But we also have another child that needs us. And I have a job that I HAVE to keep because we desperately need the insurance now (and DH looked into private insurance - approx $30,000/yr and only expected to go higher!). I can't pack up and go to Philly for six months. I don't want our family to be separated for that long.
So do we choose the hospital that has the best success rates, and in doing so, split up our family causing strain on our finances, marriage, and resulting in our oldest daughter being without her parents for long periods of time? Or do we stay local and trust that the doctors here are competent, and keep our family together while we walk through our toughest struggle yet? We are leaning toward the second option at the moment. We will know more as things proceed but for now I feel this is the best option. And with technology, there's no reason why the surgeons here can't consult with those at CHOP, even while the procedure is being performed. And there's always the possibility of bringing in a surgeon. I have no doubts that the NICU here can take great care of our little one. Its the only level 4 NICU in the area.
But in the back of my mind, I still have some lingering doubts. If we stay here, are we REALLY doing everything that we can to ensure Aubree has the best chance possible?
I guess there's no way to know for sure until we've made a decision and walked that road completely. This is the hardest part of parenting so far. Knowing there are several choices and not being sure of which is the best, but just having to choose what seems to be right at the moment.
Our journey...
4 comments:
Oh man. That's what being a parent is, I suppose--lots of hard choices! I think you're making the best possible choice with the information you have right now. That is all you can do. Also, have you spoken with your doctors about this? Maybe they can put your mind at ease, or clarify the options further.
You're lucky to have the option to stay put, in a place that will mean that Aubree has a stable, insured, intact, loving family (as opposed to being born into the stress after splitting up and paying $30K for health insurance--insane!). I think that this way you are helping her, too. If you are stressing out about money and being far away from your husband and other child, that won't be any good for her.
I'm sorry you are in this position. She is so lucky to have a mom like you. Happy Mother's Day (belatedly)!
I am so sorry you have to deal with all of this. Many prayers for Aubree and your family. Have you looked at the University of Iowa? They have a fetal diagnostic center and perinatal care team there that I believe sees HLHS babies.
Thank you, Sense :)
Mary - we've not looked at that one yet but I will put it on the list. I did find out today that our head surgeon is from CHOP (the best hospital for these procedures), and he's the professor of pediatric cardiology at the local med school. It makes me feel better about staying here if that's what we choose.
Maybe I'm totally biased, but don't rule out Philly (it's only like 45 minutes from me hahaha).
I would try to take a trip to the CHOP in Philly and see if you can't talk to the doctors there. Who knows..maybe you won't even like them at all and think they are overrated...at least this way you will have all your ducks in a row and can make the best decision.
can you take a leave from work for a bit but still have coverage? Yes, splitting up the family for a time will be hard, but people do it all the time. I don't know if I oould do it on my own, but I know you're a very strong woman. And in hindsight, it's only 6 months you said right? In the long run, it's not that long of a time, it will feel like forever, but couples make it work for their children every day :)
Yea, sorry that I just left your with more decisions, but it's definatly something not to take lightly and plan everything you can now. But I'm here for you (or if you choose to go to Philly :))
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