Can This Get Any Worse?

Diagnosis: Severe Heart Malformations

By an AHC Mom

In November of '98 I was 21 weeks pregnant with a much wanted baby. I went to my routine ultrasound and found out that my baby had very severe heart malformations "incompatible with life." At that time, my husband and I made the hardest decision we have ever had to face. After many consultations with specialists, we felt that the loving and responsible thing for our family was to interrupt the pregnancy.

Insurance coverage was the last thing on our mind. We were a wreck ... broken hearted and lost.

Luckily we were being cared for at a wonderful hospital. They knew that families in crisis were not thinking of pre-authorization requirements. They called ahead to the insurance company and explained the extent of my baby's malformations and received a pre-authorization number and reference number. We were told, under the circumstances, we were covered. One less worry...or so we thought.

In January I received my first denial. They had a statement on the explaination of benefits which said they were waiting for information from the doctor. So I figured I would be OK, the doctor would explain the situation and they would be paid. In roughly three more weeks I recieved a statement in an EOB which read: "Any services relating to and consisting of voluntary abortions will not be covered."

Was that what I had? A voluntary abortion? Voluntary as defined in Webster's dictionary is "free from constraint." Well, I felt that I was not totally free from constraint...the thought of my newborn daughter undergoing futile open heart surgery after open heart surgery and never smiling or being held, and probably never leaving the hospital was a little constraining! Again I felt that this must be a mistake! Someone was not seeing the whole picture here. I began my battle on the phone.

It was extremely heart wrenching to have to tell my story to some nameless, faceless, unsympathetic person on the other end of the phone. I would not be able to talk, I would burst into tears at their awful questions. It wasn't getting me anywhere. I called a name that was written on a pamphlet I had gotten from the hospital. It was the name of the perinatal social worker who had seen me through my darkest hour. I explained my dilemma, and she basically took charge for me. She would call me almost daily at first with the progress of my case. She kept back the horror stories as I later came to find out. (She was told not to bother pursuing this claim, as there was a minister sitting on the appeal committee.)

As time went on, I was told I needed to write to the vice president of the Employee's Benefit Trust, since he was the one who would have the final say as to whether or not I would be covered. I must explain for the benefit of the reader, that in order to find out who you must file your grievance with, you need to find out if you are fully insured - meaning your insurance is strictly through a insurance company; or self-funded - meaning your group of employees and employers pool the monthly dues into a trust, and the trust holders decide what they will cover, and have an insurance company handle the claims, etc. They usually have a secondary policy for large claims (this is usually the case of larger employers).

I was again hopeful as I poured my heart out in this letter. I held no emotion back and told him how much I was grieving over the loss of my baby. I told him of the tears and love that were in the decision to terminate. I also pointed out that they would have paid for delivery costs in four months anyway. I told him saving money for the insurance company was not my intention at all in my decision, but in fact that was the outcome. If I had continued this pregnancy, my child would have had numerous heart surgeries, and all the expenses of a congenitally ill newborn, and the end result would have been the same. My child would not have survived. I just knew that when this man read my words, he would understand.

I also visited with the pediatric cardiologist again to go over the best case scenerio, as the questions from the insurance company made me feel like I had been hasty in my decision. He again explained that my child was suffering in utero, that the chances of survival were all but nothing, and her quality of life if she lived would have been poor to say the least. He also wrote a very strong letter to the VP of the benefit trust. I waited for a response. Several days later, I recieved a registered letter from his office. It was a copy of a note he wrote to a claims reviewer at the insurance company asking if, with this information available, my claim had been properly adjudicated. I was very upbeat, he was questioning the denial...that was good right?

Exactly a week later, I received another registered letter. It said very briefly "After review of letters from the patient and Dr. A. we have determined that your policy does not cover voluntary abortion as stated on page 21 of your benefit handbook." They sent a copy of that page for my benefit as well. I was devastated. I felt raped! How could they question my choice? Hadn't I made the loving decision? Where did they get the right to discredit my doctor's medical opinion? My devastation turned to anger.

This is a day and age where prenatal testing has become routine. So routine in fact that we forget that occasionally the results are poor. Why do the insurance companies allow for all these tests and abandon us when there is a problem? I feel that the law would step in if an insurance company said, at the discovery of an anomaly, "We will not cover the expenses incurred if you choose to continue your pregnancy under these cicumstances." So, why are they allowed to do just that in my case?

It is a very personal and painful choice, and the insurance companies should be accountable regardless of which way it goes. Also, what about that pre-authorization? Was there "bad faith" involved here? Was it their intent to encourage this termination? This procedure freed them from liability for millions of dollars worth of medical expenses. When the deed was done they found a loop hole with which to escape even this minimal expense.

Since that last denial, several more doctors have written, and the head of the women's health department has even called on this person, the VP of Benefits. There has been no waivering on his part. He has refused to pay for "my abortion" as he calls it. I have been encouraged to file suit against these people who feel they can opress the choice of grieving parents in this no-win situation. They must feel so powerful.

My anger at their ignorance has fueled my intent to work for a change in the federal policies which allow them to do that. If state law had been applicable in my case, my coverage would have been upheld. ERISA is the federal policy which overrides state law in this. It is wrong, and it needs to be amended. There is a new gray area which surrounds the choice to end a pregnancy. In fact, it is a choice even when the mothers life is in danger. She can choose to risk her life.

I feel my choice had that same bearing, and the law needs to change to show that expanding gray area. I have consulted with an attorney and the case is fairly strong from what I understand. I will do all I can to keep this from happening to someone else. The insurance companies have had the upper hand for too long. They know this is a politically inflamatory subject, beside the fact we are emotionally ravaged at this time and are often not strong enough to battle them over denial. They have won playing this game, and it is time for it to end.


Books on Loss and Grief

Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy

The Dive :: A Memoir

A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love

Precious Lives Painful Choices: A Prenatal Decision-Making Guide

Sunshine After the Storm: A Survival Guide for the Grieving Mother

Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby

Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death

A Silent Sorrow: Pregnancy Loss

Unspeakable Losses: Healing From Miscarriage, Abortion, And Other Pregnancy Loss

Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families

Difficult Decisions: For Families Whose Unborn Baby Has a Serious Problem

Books for Fathers, Family, Children and Friends

Couple Communication After a Baby Dies: Differing Perspectives

For Better or Worse: For Couples Whose Child Has Died

How to Say it When You Don't Know What to Say: The Right Words For Difficult Times

A Guide For Fathers: When A Baby Dies

When Your Friend's Child Dies: A Guide to Being a Thoughtful and Caring Friend

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death

What You Can Say When You Don't Know What to Say: Reaching Out to Those Who Hurt

Books about Trying Again and Pregnancy after Loss

Journeys: Stories of Pregnancy After Loss

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death