To a true warrior…

I read so many articles latley where the author doubts the validity of Fetal Alcohol Spectrum Disorder, FASD.  I feel so very sad to read that people truly seem to doubt that drinking alcohol while pregnant can and does affect the baby.  I hope that people will read this warrior’s story and decide for yourself whether alcohol does affect a baby…

My name is not important.  I lived but for a short time but thankfully touched the hearts of many.  While I was in my birth mom’s tummy I struggled with her addictions.  See my birth mom was addicted to alcohol.  She could not stop drinking during my pregnancy and she had to drink a lot due to her advanced alcoholism.  She did not understand how sick this was making me.  While my heart was forming she drank so much that a lot of the cells needed to make my heart whole and healthy died off.  So my heart was only a single ventricle without so many of the structures were missing.  I had over 6 heart surgeries in my 11 months of life.  Even with all of the surgeries my heart could not be fixed.  I would need a heart transplant but with all of my other issues no one thought that I would receive this.  While my brain was forming so many cells were killed that my brain was not formed correctly.  I was missing so many things and my corpus callosum never formed at all.  When my face was forming it was damaged.  I had a cleft lip and cleft pallette.  I was so very sick at birth and now the search was on for a family that would be able to take care of me. I could not eat by mouth and could not swallow.  I had to have a special tube put into my gut called a GJ tube.  I got fed by a special machine.  I had seizures due to the differences in my brain.  I had to have special shots to keep from getting blood clots.  I had no one who was able to take me home and was so very alone.  Then I found out that a special family had decided to come and be my Mommy and Daddy.  I got a big sister too!  They understood how sick I was and wanted to be there so I would not be alone.  I was so happy.  After they got me I had to go in for more surgeries and was only home for 2 months before I had to go back.  I had a surgery to try to change how my heart was processing the blood to and from my lungs.  This is when everyone learned that my lungs were also so very damaged and they could not handle this surgery.  So I had to have this surgery redone and I almost did not make it.  I was placed on a ventilator.  I could not breathe on my own.  I had surgery after surgery to try to fix my heart.  Now people were learning that my airway was also very damaged.  Now I needed a trach and vent to breath.  My family was there for me loving me and praying that if I could just get bigger I would be able to get off of the vent and trach and maybe could have a surgery that would help my heart.  I tried to get strong.  I finally got to go home again.  I spent 3 days with my family.  I got to be held and kissed and loved on.  This was my favorite that I got to be part of a family and they did not care that I was different.  I was having so much fun but I had a bad seizure and had to go back to the hospital.  When I got to the hospital it was hard to breath even with the help of my ventilator and all that the hospital could provide.  I fought for many hours but finally I could not fight any more.  I went to be with the angels.  I know my family misses me.  I see them so sad and hear them cry.  I am now with all the other babies who could not live due to how badly we were damaged by alcohol.  I know that no mommy ever meant to hurt any of us.  They did not understand that alcohol can make us so sick.  They did not always get told this by important people.  I have heard that some doctors will still say that it is okay to drink.  I am not sure they understand that this is not right.  I want people to know that babies can and do get sick from alcohol.  Please help me to tell them as I am gone now.

While this story is written from a viewpoint we never truly got to hear it is a dedication to a very real little girl who fought with her warriors spirit through more than most of us can imagine.  She lived less than a year but she taught so many.  She always had a smile and always radiated her love and acceptance of all she went through.  We owe her.  We owe her to try to teach others that she was real and her fight was one that should not have had to happen.  I still watch in horror as people say only alcoholics can harm their babies…what is an alcoholic?  If someone cannot give up alcohol for 9 months to make sure their baby is not harmed?  Alcohol is not a necessary food…there is no reason it is needed.  The only safe amount is zero!!!  Please realize that babies deserve a healthy start.


About fasmom

The adoptive mom to 12 wonderful children who are affected by Fetal Alcohol Spectrum Disorder and other issues including Reactive Attachment Disorder, bipolar, schizophrenia, CP, epilepsy and oh the list goes on...The thing is these children have taught me things about myself I never knew and would not have missed out on learning. Married to an amazing man and enjoying life on a sheep ranch.
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