Thursday, February 28, 2013

When I was 20  weeks pregnant with Maddox I had to get a level II ultrasound.  The other day while reading the Houston chronicle there were about 5 different sections about Houston's philanthropy.  One of the sections was "Houston Heroes".  One of the heroes was the high risk OB GYN that told me Maddox had hydrocephalus. 

Here is the link to the article

http://www.chron.com/default/article/Childhood-dream-comes-true-for-doctor-4290360.php

Here is the response that I sent to the journalist that wrote the story. 

Dear Ms. Cowen,

I just finished reading the story in the chronicle about Houston Heroes Dr. Joanie Hare, and I would like to share my story and experience with Dr. Hare. In my opinion she is just the opposite of a Hero. Let me start out by letting you know I am the proud mother of 4 beautiful children ranging in ages from 18-3. I have had the pleasure of working with many doctors over the years for my prenatal care and never experienced what I did when I went to visit Dr. Hare. In November of 2008 I found out I was pregnant with my 4th child. Super excited about having another baby I went to all prenatal appointments as I should. Due to my age I was told I needed to have a level II ultrasound at the time I was 36 years old. I was seeing an OB GYN at Willowbrook Methodist hospital which at the time did not have high risk doctors. Again I only had to go see Dr. Hare due to my age. Lets fast forward to March 3, 2009 when I was to go see Dr. Hare for my ultrasound. My appointment was at 2:00 or 2:30 it was almost 4 + years ago. I sat in the lobby of the doctors office until around 4:00pm, only to sit in another waiting area until around 5:00. When Dr. Hare finally came into the room to do the ultrasound close to 20 minutes later, she was very impersonal. She was adding some flavor packet to her water and shaking while asking me in a very impersonal tone, "Mrs. McNear why are you here to see me?". I proceeded to tell her that due to my age my OB GYN wanted me to come get a level II ultrasound. She then asked me why I had not had any prior testing done (FISH test) to check for any chromosomal abnormalities. I told her I had not had any testing done with any of my other children so I did not feel the need to do any testing with this baby. She then told me "at my age there was a 1% chance that anything could be wrong with my baby" and then she began the ultrasound. With most ultrasounds you get the whole "look there is the heart, feet, hand, etc...". Dr. Hare said nothing to me directly only said things to the nurse that of course I didn't understand and then after 15 minutes of silence to me and my mother in law she finally said "Mrs. McNear your baby's brain is not developing the way I want it to and I need to do an amniocentesis now, can I do the test?". I asked her again because now I am in shock what did this mean and she said "I don't know, I need to do the test". I consented to the test and was moved from that room to another room where a genetic counselor came in to talk to me. She said she was told by Dr. Hare to come in and speak with me. I asked her what did this all mean and she told me that the baby could have a condition called trisomy 13, 18 or 21. All of which were fatal to the baby and that is what the FISH testing would determine. I then asked if that wasn't the case what was wrong then and she said that it was a severe case of hydrocephalus and that Dr. Hare suggested that I terminate the baby immediately. I told the counselor that was not an option and she said that Dr. Hare had said this was not the baby I wanted and I should terminate the pregnancy. I have 3 perfectly healthy children and now this doctor that I was only coming in to see because of my age is telling me that my baby's brain is not developing the way it should and that I needed to terminate my pregnancy. Needless to say, it was all very overwhelming and extremely traumatic. After the amniocentesis was performed she told me that she would be sending out the sample for testing and she would get back to me as soon as possible the next day. The next day came and after not hearing back from the doctor, I called and asked if the results were in. I was told the sample had not even been sent out until that morning and they wouldn't know anything until the earliest the following day. During this time I cannot express the extreme sadness and anxiety that was experienced. All which is not very good while you are pregnant. I never went back to Dr. Hare. I found a new wonderful and compassionate doctor that did confirm that my baby did in fact have hydrocephalus but that besides that everything else was perfect and looked great. He took his time and did an hour + ultrasound measuring, checking and the entire time telling us what he was looking at and why. Unlike Dr. Hare, who honestly seemed inconvenienced by me being in the office asking her to do what she said in your article that was her dream job. I have read many reviews of Dr. Hare and from what I read, if your baby is not what Dr. Hare seems perfect and beautiful, they are not worth being born and should be terminated. It saddens me to think about how many beautiful children have been terminated because of the horrible fate that Dr. Hare felt they had. Children that yes, may not be perfect, in the eyes of society, but are no less worthy of being part of our earth with the rest of us.

Let me skip ahead to July 14, 2009. I gave birth to a beautiful baby boy. Maddox came in to the world crying like all other children and was immediately loved and doted over. Yes he did have disabilities, but it didn't make him less wanted, less worthy or any less loved. I wish that prior to you writing this article you could have had all spectrum's of what Dr. Hare does. In my eyes she is not a hero. It is not her place to inflict her opinions on her patients. Yes she should inform them of their babies health, but never should she tell someone "this is not the baby they want and they should terminate immediately". How did Dr. Hare know what kind of baby I wanted. A baby is a baby and is always a blessing that should never be discarded or not wanted due to disabilities. Side note - the diagnosis of hydrocephalus is the most common reason children have brain surgery. Approximately one in 500 infants are born with hydrocephalus or acquire it shortly after birth. If you think about the number of children that are born in the world, the diagnosis of hydrocephalus is not a death sentence and it a very manageable condition.

Maddox is now 3, goes to early childhood classes at Schultz elementary. He is nonambulatory, nonverbal, has epilepsy and is visually impaired. But he is the happiest, funniest and most loved little boy to everyone that has the pleasure of meeting him. He is strong, smart and extremely handsome. And if I would have listened to Dr. Hare he would have just been discarded as medical waste because he was not what she thinks is perfect or worthy.

Just wanted to share my opinion of one of Houston heroes. If this is all that Houston has to offer in heroes, I think we live in a very sad city. 


I have always wanted to write a letter to Dr. Hare, letting her know how horrible she treated me and how horrible it made my pregnancy to try and enjoy after she rudely told me her opinion of my child.  If any of you get horrible news like this from your Dr. about your baby, know they are not right for telling you to terminate your pregnancy. Everyone has the same right to be born as a "normal" baby.  It is not the Dr.s place to play God and try and convince you of anything else.

2 comments:

  1. Well-stated! I'm glad that you took the time to write that letter, and it's clear you wrote it from the heart.

    I hate that many perinatologists view our kids as less than worthwhile. True, our children have a lot of struggles, and we have to fight a lot harder for even the most simple things, but none of that makes their lives less worth living.

    In fact, I would boldly say that Claire's life is more valuable than that of a typical child because of all that she teaches those who know her: Patience, grace, bravery, humility, gratitude.

    I hope one day we will reach a point where perinatologists can see what lovely, wonderful children we have so that we won't have to write letters like the one you wrote.

    ReplyDelete
  2. Omg ur story brought tears to my eyes.. im glad you ened up finding a better obgyn

    ReplyDelete