A Mother’s Testimony Before State Congress

Posted on Posted in Alobar Holoprosencephaly, D&E

By Heather P.

A Mother's Testimony
Please tell me how a law mandating that within a 72-hour period before a termination a woman like me has to speak with a doctor or other “qualified health care provider” would have been helpful to me during this excruciating time in my life.

Dear esteemed members of the NC House Health Committee, my name is Heather P. and I am writing as testimony in opposition to HB 465 being considered tomorrow in your chambers.

I kindly ask you to read my story with an open mind before deciding how you will vote on this important issue.

HB 465 seeks to both limit and truncate the rights of all North Carolina women while additionally placing one of this state’s most esteemed medical learning institutions at risk of monumental damage to both its reputation and ability to retain its full accreditation.

The restrictions being proposed against UNC Healthcare schools for abortion services, the arbitrary additional restrictive waiting periods are two among many of the horrible restrictions being proposed that I would like to speak about specifically.

In 2006, my husband and I were pregnant with our first child. All of our early screenings and tests were going fine with no signs of complications. It was at the “20 week” level II ultrasound that instead of finding out the sex of my baby, my life changed forever. The ultrasound tech was quiet….too quiet…and avoided answering questions. She stoically said that the doctor would be in to “go over everything.”

My heart dropped through the floor. Something was wrong. I just knew it. A mother always knows.

Our son was diagnosed with a significant and severe brain abnormality called Alobar Holoprosencephaly (HPE), meaning the brain did not divide into the normal two hemispheres. As a result (in our case) in addition to massive brain damage, major system malfunctions, everything along the midline of the face is affected. Closely set and bulging eyes and a lack of properly formed nose. In its absolute worst manifestation this abnormality can result in a child with one cyclopic eye. While there are milder forms of HPE, the end of the spectrum we were on was described to us as “devastating and incompatible with life.”

If the earth could have stopped rotating on its axis I was sure it had done so because time seemed to stand still.

We were told that these cases are devastating, our baby would die soon after birth if I made it to term, that they had no explanation for why I had not miscarried earlier, and that the vast majority of these cases are random, sporadic events, with a small chance of a genetic marker being the cause. We made the decision to have an amniocentesis on the spot “just in case” and sent cells out to a lab in Maryland that specializes in genetic testing.

Our hearts were broken. We were referred for an immediate second opinion and within an hour were given the same diagnosis and prognosis. We went from thinking we were going to find out the sex of our child to having to make the most difficult decision of our lives. We were counseled that the decision was ours, and ours alone, but thankfully were also given all of the medical facts and realities by specialists in prenatal diagnoses. So, yes…we would have to decide whether or not to have an elective termination.

HB 465 seeks to place significant and horrifying restrictions on both the nature and scope of abortion services in the state of North Carolina. These restrictions should never have to be a part of another family’s decision to let a gravely ill, much wanted child rest in peace.

For us…it was an obvious, but not easy decision to make. To keep our child from suffering what we knew and felt would be unspeakable pain and suffering, we made the decision to interrupt the pregnancy and to terminate. But doing so at 20-21 weeks is not a simple or painless process by any stretch of the imagination.

We were given the option to be induced and deliver or to have a D&E. There was no question in my mind. I could not handle being on a Labor & Delivery ward and delivering a baby who would die a painful death in my arms.

We were referred to one of the foremost experts in second trimester terminations at the University of Chapel Hill Medical Center, Dr. David Grimes. He was, is, and always will be my hero. Dr. Grimes provided my husband and I both the physical and emotional care that we could not have dreamed possible at our darkest hour. He is an extraordinary physician whose knowledge and compassion are incomparable. The mere thought of a medical expert like Dr. Grimes (and his students) being cut off from the access of women like me is beyond painful and appears nothing short of a vengeful attempt by bill sponsors to impose their beliefs onto personal decisions that need the services of a major medical facility in this area.

Representative McElraft has said that “We do not want state funds being used for abortions. Our constituents have made that loud and clear from all over the state of North Carolina.” This is an oversimplification and an imposition of personal beliefs at best. I have yet to see any vote to suggest that this statement is anything more than that.

There was a nine-day gap between the day of diagnosis and the first part of my D&E procedure. These quite possibly were the worst nine days of my life. I didn’t leave the house for fear of having someone ask when I was “due.” I managed to send one group email out to friends as I needed people to know, to understand the decision we had made. I wasn’t ashamed, and I refused to lie and say I had miscarried.

Please tell me how a law mandating that within a 72-hour period before a termination a woman like me has to speak with a doctor or other “qualified health care provider” would have been helpful to me during this excruciating time in my life.

Ladies and gentlemen, it is a slippery slope when lawmakers start specifying the who, what, where, when and hows of the most personal decision anyone will have to make. The only people who should be involved in any portion of this decision making process are a woman and her physicians.

Pro-life supporters and legislators who insist on setting limits and other “qualifiers” on access to abortion services have a hard time seeing the world of gray that my story represents because it forces them to go to a place where they may have to reconsider their stand. Well, as they say in the movies….”Welcome to my world.” It’s one I hope you never have to visit.

Please, do the right thing for the women of North Carolina: vote no on HB 465. Trust women. Trust our decisions. Trust our physicians. Vote no on HB 465.

 

 

photo credit: Washington statue, North Carolina State Capitol via photopin (license)