In Memory Of Our Son Ethan1

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This site is in memory of our precious little boy Ethan. He was born still on October 9, 2003 due to Holoproencephly or Agenisus Of The Corpus Callosum or an Autosmal Ressive Gene

In the begining the doctors did an ultrasound just to check to see if I was correct on my last period. She gave me quite the scare there, she said that there was a sac but there was no developing fetus, she tryed to calm me by saying that it just might be too soon to see the baby yet. I was so scared she gave me an appointment for the following week to check on him. That whole week seemed like a year. I finally arrived at my ultrasound date and everything turned out to be fine, what a releif it was to hear that. The weeks and months passed by so quickly and it was finally time for our 18 week ultrasound, we were so excited because we wanted to know the sex of our baby, well I guess he wanted us know because he had his legs wide open for us, my husband and I both had tears in our eyes, Ethan is our first child together. We left there so excited thinking of names, what we were going to buy, all the joys and dreaming that comes with it, but little did we know...

I got the "CALL" from my doctor, every mothers worst fear, something was wrong with our son. She told me that Our precious baby boy has what looks like cysts on his brain and wanted me to get to a childrens hospital for a Level 2 ultrasound as aoon as possible, she said that she was sorry that she had to do this over the phone but she didnt think that it could wait. I was crying my eyes out, I was all alone, my husband was at work, and none of my friends were around. I called my husband and gave him the news and he came home right away, We called the childrens hospital and went in the next day. The doctor told us that it was a fatal condiotion and that he would not survive, he gave him a diagnosis of Holoproencephly or Agenisus of the Corpus Callosum.He also said that our son only has 3/4 of a brain that his brain is deteriorating. Our world came crashing down on us that day. On the way home from there we decided to call a hospital in Boston for a second opinion. Well we got an appointment for four days later and my husband and I were hoping that it was all just a mistake. We got called in for the level 2 ultrasound hopeful that things would be ok, but by the look on the tecs face we knew it was'nt, she told us that she would be right back with the doctor, right then we knew, it was true our baby wasnt going to make it. The doctor said the same thing possible Holoproencephly or Agenisus of the Corpus Callosum. We were so heart broken, because when we went to Boston not even a week later Ethan only has 1/4 of a brain left. His brain deteriorated rapidly. The doctor said that he may live for a few more days and that I was already dialating, I guess I was in alot of shock because after that everything seems like a blur. We met with a genetisist so that we could get more information about the diagnosis. All I remember is that it was fatal and there was nothing we could do to stop it. We were also asked if we wanted to do an amnio to find out if it was a chromesome defect, we said yes. The results came out normal the doctors said that there is no chromosome problem. We went in the following week to deliver our stillborn son. The doctor asked if we would like to have a fetopsy done on Ethan and we said yes because we wanted to make sure that this would not happen again. So we signed the papers giving them permission to do the fetopsy. We went in on October 8th to deliver Our precious little man. I was induced around 6:00pm I assumed that the whole process would take a short time where I have had other children, but it didn't. I endured alot of pain because I just was not dialating, my body was just not going through the process of the whole heartbreaking ordeal. I finally delivered our Precious Ethan at 6:40 pm on October 9, 2003. I held my son's still lifeless body and studied every inch of him, I wanted to remember how he looked at that moment, I was afraid that I would forget. My husband was so heartbroken all he could do was cry, he didn't want to hold him but I knew how much he longed for the son we had dreamed for, how he wished that he could change it all and have him with us. The look in his eyes when he saw our son showed all the love that he had in his heart for his child. The nurses came in and took pictures of Ethan with my mom and dad, but they never took one of Ethan, his Dad and me. And then they took him away, we saw our son for the last time. Shortly after they took Ethan I was discharged from the hospital, I didnt want to leave my baby but I knew that he was not coming home with me. My heart felt so empty, my arms ached for my precious little boy.

Well in April of "2004" I took all of my Son's ultrasound films, and all of my records from my pregnancy to see another genetisist. She told me that my husband and I are carriers of a gene that is the same, that is what caused Ethan's death. She also told us that we have a 25% chance of it happening to us again.

We will never know what happened to our precious son because the Hosptial failed to do the Fetopsy. The only thing we can go by are guesses that three different genetisist say.

There is no greater pain than losing your child, I've lost two and I don't know how I am still sane. But I know in my heart that my little Angels are with me still watching over our family. One day I will be with them again and until that day my heart will ache for them.

My hope is to bring awareness of Hospital mistakes, nurse who decide that it is inhummane to allow fetopys to be done, you see we needed the fetopsy to be done on Ethan because we planned on trying again and we wanted to make sure that it would not happen again, but we first got the story that the nurse that was caring for Ethan and I thought that it was inhummane to bring him to pathology, then we got the story that it was a mix up in paper work, and that I was give the wrong form to sign. We found out a month after Ethan's burial that the fetopsy was not done. I can only hope that this does not happen to another family, because the not knowing is the worst and we will never know what happened to our precious little boy, we will NEVER know what took his life....

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