Diagnosed with conginital diaphragmatic hernia

A week and half ago, mine and my husband, Tony’s, life completely changed. 

I had a feeling something was wrong with our unborn child that I just couldn’t let go of.  There was no reason to think something was wrong, we are both healthy, have four other children between the two of us, and still reasonably young.  Okay, we are both 37 but feel 22.  My OBGYN was very nice about my gut feeling, and suggested I a quad screening and a level three ultrasound to put my mind at ease.  I didn’t know what I thought was wrong, but I just knew something was wrong.  The quad screening came back normal. I began to think maybe I was crazy.

On the day of my ultrasound, Tony had to work and just couldn’t get out of it.  I almost cancelled, but decided to go just to put my mind at ease.  I took the long drive to Willmington from my small North Carolina town, singing with the radio hoping we may find out the sex of our little peanut.

I talked to a genetic counselor, and really felt crazy because genetically the chances of my husband and I having a baby with a defect were not very good, and being 37 really doesn’t increase the chances of downs syndrome very much.  I was taken into a beautiful sonogram room and waited for the technician.  When we started the sonogram, the first thing I saw  on the screen was my beautiful baby’s face.  It really seemed like she was looking at me.  The technition looked over the baby and my concern was boy or girl.. She said she thought it was a girl.  She got very serious look on her face and became very quiet.  I got a terrible sinking feeling.  She was very nice and told me she told me the baby’s heart was on her right side and she thought she saw her stomach and intestines where her heart should be.  Being very naive, my comment was, at least all of her organs are there. that’s a good thing.

I was taken to a comfortable looking room and waited for the doctor.  I texted Tony and told him we were having a girl, but they saw something wrong. I didn’t even dawn on me to be upset.  I just sat there for a few minutes looking at her pictures, very happy we were having a girl.  The doctor came in and explained the baby had a congenital birth defect called a diaphragmatic hernia.  I said okay, that doesn’t seem so bad my son an umblical hernia and it fixed itself.  Then the doctor explained what a diaphragmatic hernia was.  After that I don’t really know what was said, because I went into shock.  I remember asking if the baby was going to die, and the doctor didn’t answer me.  I began to cry.  The doctor suggested I have an amnio, and I agreed.   I had an amnio minutes later.

The drive home was awful.  I cried the whole two hour trip.  I called my Tony and he cried with me. We have a one year old son, who I had left with my husbands mom, and I decided not to pick him up alone, to wait on my husband.  I met Tony for lunch, and we tried to compose ourselves.  We told his mom first.  She didn’t understand and I couldn’t explain what was happening at that time.  I just couldn’t make myself say the words.

I woke up the next day and made a decision.  I was not going to be miserable.   I was going to read everything I could and be prepared, but I was not going to be miserable.  So the question of the day was what do I do now?  Do I just go on and be excited about having a baby girl or do I not buy anything.  What do I do.  To be honest I am still in the what do I do mode.

Tony told me to hold my head up and to go on.  We have a one year old son that needed me so to just go on. 

I called my mother to tell her the news.  I was really needing support.  She told me to have an abortion.  I couldn’t talk to her.  I then called my father.  He said the same thing.  All I can do was cry.

It has been a week and a half since we found out.  The shock is wearing off some.  I don’t cry so much anymore.  Instead of crying ten times a day, I am down to only two or three times a day.   Now I am in seek out as much information as I can mode.  Information has made things seem better.  Tony and I are determined to do whatever it takes to save Lizzy Jo.  She is going to be a miracle.  Her amnio came back normal, which is a relief.  We are just fighting a diaphragmatic hernia.

I go back to the doctor next week.  My regular OBGYN referred me back to the specialist in Willimington.  I really liked her.  Hopefully we will be able to come up with some sort of a plan.  I know Tony and I are in wait and see mode, so I am just going to hold my head up and keep reading.

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