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I have included this story that my husband wrote for our VACTERL support group newsletter.  It is with his hesitation that I include this story, but I feel it is important to share a man's point of view.

Our Son – Isaac

by Martin Quijas

October 2004


Our second son Isaac was born with VACTERL.  He has various physical anomalies or birth defects.  I’m not sure which of those words I like better, anomalies or birth defects, because both of them hurt.  It hurts because we know Isaac has a ways to go with doctor visits and future operations.  It hurts so much because we simply don’t know his future.  We don’t know if he’ll be with us after the next operation.  His condition has been a hard thing I’ve had to come to grips with.  I feel at times if I just don’t talk about it, that it will make it less serious.  Not that it will go away, but it just won’t be as bad if I don’t talk about it.  Maybe that’s just the way men deal with some things, which is opposite of my wife.  She wants to talk about these things.  So, I’ve been little support for her in this respect.


We have learned to lean on family members for comfort.  I have told my sister, who is a nurse, all his problems.  She handles it well.  My other sisters take it to heart and are overwhelmed.  My in-laws have given us much support as well.  My parents know something is wrong.  I avoid telling them any details about Isaac’s condition.  I know that my parents could not handle all the things I would tell them about my son. 


Both my wife and I have been through much stress.  Those of you who have children with VACTERL or any other serious illness for that matter know what I am talking about.  It was a shock at first to know that my child had VACTERL.  It’s something that I’ve never heard before.  We all wish for a healthy child.  It just didn’t happen for my son, my precious innocent son Isaac.  If you were to look at him you would not notice any outwardly differences in him.  But he has several serious internal problems.  When I think about it too much my heart fills with anguish.


The day my son was born he had to be transferred to another hospital that could handle his conditions better.  His first surgery was one day after his birth.  Now what an awful way to start out life.  Fortunately my wife was transferred to the same hospital so she could be with him.  She stayed there as a patient for several days as she recovered from the c-section.  As she began to heal she was able to see him daily.  I would come to the hospital to visit her and Isaac.  I would leave my 2 year old son at home with my mother-in-law, thank God for her.  My first son felt the stress.  He didn’t see his mother at home for a while.  While Isaac was at the hospital for most of the first 1 months after his birth, my wife and I would take turns staying at the hospital for a week at a time with him and the other would be with our first son.


After 2 weeks from birth Isaac was released from the hospital.  He was doing well for a few days and then we had to readmit him into the hospital.  Two more surgeries would come.  I’ll never forget the second surgery.  I was there when he came into recovery, just out of surgery.  That day I saw the pain in his eyes.  He wasn’t just crying, he was in extreme pain.  It’s an overwhelming experience for me.  I cry now just thinking about it.  To see someone you love go through pain and there was nothing you can really do, outside of seemingly futile efforts to comfort him.  Fortunately the morphine did work fast and it calmed his body and his cries.


The nurses and doctors did their part.  They tried to answer all our questions.  They tried to make us feel that everything would be OK.  I can say that we have had a very good experience with the surgeons at Presbyterian Saint Luke.  I believe our son has been lucky to have the doctors he has had.  What would we have done if we didn’t have insurance?


After this second surgery in the very early morning he had problems breathing.  I was there with him that day.  Commotion sprung in the children’s ward as code 40 was announced on the floor.  Doctors and nurses ran to the room.  That day my son almost died.  But he is with us now.  And I have to be happy about that.  I have to be happy for today that we are together.


I tell my wife that life seems so difficult now.  This experience has put so many questions in my mind about the world and about life.  Why did this happen to my son?  Why does he have to suffer like this?  What is life really about?  Why does GOD let this happen?  These questions never get answered but it tells you where my mindset is.


Isaac had another surgery the end of September.  I was not looking forward to this one.  We’re told it would be painful for him, but I knew it would be painful for us to see him go through it.  Thankfully everything went well and to our surprise he was not in much pain.  A week later you would not know that he had just had major surgery.  He was rolling over and trying to sit up.


People tell us to we have to accept some things in life.  They say “what was meant to happen will happen” or “you can’t change some things, because GOD is in control”.  In a way this does help.  At times I use this to accept his condition.  At other times it makes me feel so helpless knowing that I can’t do anything for him.  None of us know the future of our children regardless of existing ailments they may have, but his condition puts even more questions in my mind.  And although I want to know the worst case scenario, I do wish the best for him.  That is what drives me.  I know my blood flows in him.  No one can change that fact.  He is a Quijas.  He is my beloved second son.  I love him unconditionally and I want him to reach his potential.  I want him to be strong.  I want him to be a great man.   I will always hope for my son.  I will play with him like there is nothing wrong with him. 


If I am lucky I will see him grow up and leave our household to start his own life.  Until then I will pray for mercy on his tiny body and peace for him.