I Knew He Would've Been A Redhead
Diagnosis: Severe Hydrocephalus
By an AHC Mom
It has been six months since we sent our angel up to Heaven. I love my little guy more than anything in the world. I am writing my story in
tribute to all the AHC moms and dads who bared their souls on this Web site.
I read and re-read all of your stories and found much comfort in knowing that there were others out there who had been in our shoes. I am almost
at a loss for words to describe how much this web site meant to me during the weeks of devastation I endured. There is nothing like this group of
people and I will share my story with the hope that some person may find comfort and strength from me.
I became pregnant October 2001. We were overjoyed, as we had been trying for about a year. No morning sickness, I felt great. I did get into a
minor car accident with a deer in December, but we went to the ER and had a sonogram and everything was perfect. I made plans for our baby and
could not wait to become a mother for the first time.
My two best friends were also pregnant within weeks of me and several other close friends were pregnant as well. We were all going to have babies
born during the September 11 "baby boom."
I registered for my baby shower at Babies R Us. I was so excited. We painted the room a unisex periwinkle color and got all the furniture
delivered and set up in the nursery. I know I was rushing things, but I felt everything would be perfect.
I continued with my scheduled appointments and I called to make my 20 week sonogram appointment. They scheduled me for Valentine's Day. I was
very particular about waiting to be far enough along so they could really see the vital organs and also so I could find out the sex of the baby.
When I arrived at my scheduled sonogram appointment, the office said they did not have me down in the book. I was furious and said to them that
of course I had an appointment. I had been telling everyone for weeks that I was finding out the sex on Valentine's day. They said they would
squeeze me in. I had to wait for an hour and a half. I was very angry, but something told me to wait it out.
Finally, I got on the table. The tech asked me if I wanted to know the sex and I said "yes." He said it was a boy! I was so sure it was a girl,
but I was thrilled at the prospect of having a little man in my life. I knew he would be a redhead. My little redheaded Irish boy. My husband had
such red hair when he was little. They called him "Carrot-Top."
The thought of this little boy filled my mind as I tried to make idle chit-chat with the tech and he took lots of pictures. I told him he must
love his job because it was such a "happy type job" and he said "not always" and did not say anything else.
In retrospect, I should have known something was wrong by the way he was acting, but I was still floored over knowing I was having a son and
making plans about how I would tell my husband.
The tech was sweating. I remember I thought it was odd to be so sweaty in February. There were no other doctors called in and I went on my merry
way to meet my husband for a romantic dinner. I told him over dinner that he was about to have a son and he cried.
One week later, on my 31st birthday, I received a phone call at work from my doctor. She said simply "There is a lot of fluid on his brain and
you need to come in right away for a closer look." I knew that very instant, I can't explain how, but I knew I would never hold him in my arms.
I went through that night in a fog. The next day an amnio, then on to a high tech diagnostic facility, back to the hospital, then the next to a
perinatologist, then another. All in all eight professionals looking at my baby on a tiny black and white screen, giving me the words that would
change the rest of my life. He has severe hydrocephalus, enlarged ventricles and a stunted cerebellum. He would be profoundly retarded and would
have no quality of life.
There was no decision to be made. I loved him so much I could let him go without any hesitation. He was a perfect little soul in a damaged body.
It was our job as his parents to send him up to heaven.
I decided on a D&E. I could not go through labor and delivery. I wanted to be put under anesthesia. There was no facility locally that could do
the procedure, so I had to drive to NYC every day. The first day we arrived at 7:00 a.m. So early, but there were protestors outside. I respected
their convictions as long as they did not approach me. They approached my husband who had a few choice words for them, but that was the extent of
The waiting room must have already had 50 people in it. In all my life I have never seen such a sad sight. Such young girls having second
trimester abortions is heartbreaking and some of them have been there several times. Some of the "experienced" girls would show the new girls which
forms to fill out and where the bathroom was. That really disturbed me.
The place was like an assembly line and I resented the fact that I had to be there with all these girls that did not want their babies. My
husband was my rock and I will never forget the deep love and respect he showed me during those darkest of days.
They called your name over the loudspeaker and about ten girls at a time went downstairs. You had to strip into a gown and put all your
belongings in a Hefty bag at your feet and write your name on the front of the bag in black magic marker.Then you would sit and wait for hours, in
your gown arm to arm with other terrified pregnant girls watching some morning talk show, but not paying attention.
There were so many rooms for procedures in the place it was like a maze. My son was 20 weeks three days when we let him go, but he had so much
fluid accumulation around his head, he was the size of a 24 week old. Because of this I had to be dilated over a two day period and then the
procedure was performed on the third day.
The first night with the laminaria was not all that physically painful. The second night was very painful and I could not take any medication
because I was to have anesthesia on day three. Day three I arrived at 7:00 a.m. Again I was in intense pain and went through the same drill: get
called down with the ten other girls, Hefty bag it and wait. I cannot explain how humiliating this was.
I will say my doctor was a superior human being. He was kind and professional and I am I am very grateful that I crossed paths with him in
I was put under general anesthesia and then I woke up to screaming young girls in the recovery room. Gurneys so close to one another you could
touch the girl next to you. You then had to walk to the recovery area and eat some crackers and ginger ale and then put your clothes back on and
get out so the next wave of recovering women could take your seat. I was never so happy in my whole life to leave a place.
Once I left, I allowed myself to let my emotions out. I had somehow cut off all my emotions from the day I got that phone call at work. I cried
non-stop for two days. Then, to add insult to injury, my milk came in and I cried for two more
days. It was just horrible.
Of course then when I started to talk to people they would tell me how young I am and at least I could get pregnant, blah blah blah. I know that
is just ignorance, but it is hard nonetheless.
I have spent these past six months trying to keep my sanity. Sometimes I succeed and sometimes I fail. It comes and goes. All my tests came back
genetically fine. There was no reason this should have happened. He was just the statistic that it happened to. I found comfort that if at least it
had to happen to me, it took the statistical chance away from it happening to any of my friends or their babies.
Half of them have their newborns now and they are all doing great. It is such a relief to see their healthy babies and very devastating for me
at the same time. I am healing, but this will be something that is with me forever.
I am angry this happened to me. I am angry it happened so late into my pregnancy. I am angry that there is no reason that it should have happened.
I am told that I am not at increased odds for this to happen again, but I am angry that I will be forever robbed of a joyful pregnancy.
I am angry that I went a whole week thinking I had a perfectly healthy baby boy. I am angry that no one understands me unless they have been
through the same thing. It is so hard to find people who have walked in our shoes. It is such an awful bond to share with someone, but I find
comfort by knowing there are others out there.
Lest you all think I am a bitter, I am trying hard to be optimistic about the future. My husband and I both believe that that little boy's spirit
will come back to us in a better body next time. I dream of that day.
I am grateful every single day for prenatal testing. As hard as this all is, I am grateful I had the knowledge to make my decision. I am grateful
that I had doctors who did not miss the signs on the sonogram. I am grateful to know that I am capable of being a selfless and brave human being.
I am grateful to my family and friends who supported us as best as they could. I am grateful that I live in a county where I have a choice about
what to do with my body and I will fight for that right for others until the day I die. I am grateful that I am so lucky to have found my soul mate
in my husband. And, again, I am grateful to all of you who have shared your personal stories and have given me insight and strength.
Most of all, I am privileged to have had that little dude in my belly for 20 weeks and three days. In that short period of time, he taught me
more about life, love and myself then I could have learned in a lifetime.