A Fight, Resolution and Joy
November 23, 1998

Dear Parents and Friends of the Heart,

As many of you know, my family moved from Texas to Florida this past summer. We have weathered Hurricane Earl and Hurricane Georges and become adjusted to our new home. We've learned about how to evacuate for a hurricane and when to just "wait it out" (Georges missed us. Phew!). And we've taken all of that pretty much in stride.

Perhaps the most difficult part of the move has not had anything to do with our new locale, change in climate, or separation from family and friends. The greatest challenge we've had is dealing with INSURANCE.

I know there are a lot of you out there who can relate to this. It wasn't bad enough we had to move over a thousand miles away from home to a strange city, but we had to change our HMO. Our insurance has always been provided by either Frank's or my job. Now that Frank is in school we knew we wouldn't have that luxury. Before Frank even accepted the slot in the nurse anesthesia program, we had to investigate whether or not we would have insurance - most importantly for Alexander. We added up the bills of Alex's two open-heart surgeries and they came to a quarter of a million dollars. There is no way we have that kind of money. If it hadn't been for our great insurance I'm sure we would have had to pay for his surgeries for the rest of our lives.

Because I am self-employed, I was eligible for insurance. I signed us up and went through the normal processes of interviewing and selecting a Primary Care Physician (PCP). The boys had their annual checkup and flu shot. The PCP for the boys is simply wonderful. The boys and I felt at ease with him immediately, and even though he doesn't have many CHD children in his practice, he does have some and seemed eager to learn about Alex's condition - which meant a lot to me.

But this PCP has shown how he cares more than that about Alexander. We discussed the importance of having Alexander checked by a pediatric cardiologist as soon as possible for a good baseline. We also knew that it was important for us to be comfortable with this doctor while Alex was well so that if something unforeseen occurred, at least we wouldn't have to deal with getting to know a new doctor at the same time.

There are no PCs in Panama City. I chose a PC in Pensacola upon the recommendation of my PCP and made an appointment. The day before the appointment my HMO called to say that the visit was denied coverage. They said there WAS a PC in Panama City and that Alex would have to go to him.

Come to find out, the PC in Panama City has not passed the boards. He is a pediatrician with training in cardiology, but without cath privileges anywhere, and without those important letters behind his name. ;-) My PCP was quick to write a letter and call my HMO immediately to inform them that Alex has a severe, congenital heart defect and needs to be seen by a qualified PC.

I followed up with calls to my HMO, but was told that what I said didn't matter. The only person their review board would listen to was the PCP. I don't know what I would have done if my new PCP had not been right on top of things. I guess I would have had to pay for Alex's visit out of my own pocket.

Instead, thanks to the prompt response of our new PCP, the original ruling was overturned. Last week we had our first appointment with Dr. William Blanchard in Pensacola at the Nemours Hospital (yes, related to the one in Delaware). Dr. Blanchard was wonderful! Some of you may remember my tearful post months ago after seeing Alex's PC in Texas for the last time. I had expected the visit to be very different than it was and I shared my feelings with you.

Well, it's nice to be able to share happy feelings this time. :-) The doctor was professional and thorough (he even did a quick echo on Alex!). He was respectful towards me and a patient listener. I was impressed with his experience (he has a number of HLHS patients including a 7 year old and some younger HLHS children), but more than that, I was impressed with the way he handled Alexander. Like our PC in Texas, he was very gentle and kind. He spoke to Alex and interacted with him respectfully. I appreciated that.

Alexander's condition has not changed since our last PC visit. He's still doing beautifully. The regurgitation in his aortic valve is so minimal that Dr. Blanchard couldn't hear it (neither could our Texan PC) and only knew it was there due to the echo with Doppler. I told him our former PC had said that Alex would probably need valve replacement in about 20 years. To my delight he dismissed my words with a wave of his hand, saying, "In twenty years we might have a wand to wave over our patient's chest, like in Star Trek." This is what I wanted to hear!

I almost hugged him. I probably thanked him 3 or 4 times. Instead of leaving the PCs office feeling the weight of the world on my shoulders, I left feeling joyful. Yes, joyful.

Alexander is in the 50th percentile for height and weight (Joey, my "heart-healthy" child is in the 25th) and his heart function is great. His new doctors are pleased with how he looks to them. I can see him growing and learning. He's really developing into a quite a little boy. He's not a baby anymore (which he's quick to point out!).

What a difference a positive attitude can make. I'm so thankful we've moved to a place where there are such caring professionals to watch over our children. I hope all of your children are doing well, too. :-)

Anna Jaworski
mom to Joey (almost 7!) and Alex (almost 4!) HLHS
Author of Hypoplastic Left Heart Syndrome: A Handbook for Parents

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