Rachel in walker (4-18-01)

" Why perform life-prolonging surgery on a trisomy 13/18 child" Because all life should be respected.  And some of our trisomy children can and do live.  Without intervention, we may be allowing children who might otherwise be able to live to die without a chance....to die without our having the opportunity to learn from them, to receive joy from having known them and to be empowered by their grace. Many medical professionals say "why bother when the outcome is already fixed?"  Well, we say - BECAUSE SHE'S NOT DEAD YET AND BECAUSE SHE MIGHT LIVE!  Why shouldn't she have a better quality of life through medical intervention while she is living? Someone else's chromosomally normal child might get hit by a car and die tomorrow or come down with childhood cancer or something, but we don't deny them everything they need in anticipation of their living before any unforeseen malady occurs.  The truth is that we don't know for sure the outcome is fixed.  And let me tell you, having just lost a child at three days of age - whose outcome was fixed because her heart was so bad that only a heart transplant could have saved her - it doesn't matter.  Regan's life still had great value and we gained much from having known her.  Every minute we gained from the medical intervention she did receive was a gift.

When my 2nd trisomy 18 daughter (the newborn who was just buried last week) was diagnosed, they repeated the usual "no quality of life" message to us.  We said, "who are you to judge whether or not she will have any quality of life?"  Just because they personally are apparently afraid of having or caring for a special needs child doesn't mean there won't be any quality of life.  Who are they to judge that.  How could they possible know.  All children, no matter how profoundly retarded, can still give and receive love.  Our older trisomy 18 daughter (the one who will be 5 in April) has a wonderful quality of life.  She has many developmental issues and needs care 24/7, but she has a wonderful quality of life.  Rachel is a very happy little girl and she will never know what it is to have to join the rat race - she will never know the kind of difficulty we chromosomally normal adults have to deal with every day of our lives.  No, it's the parents of special needs children who often have a compromised quality of life trying to keep it all together while caring for their special needs child - trying to get the medical help they need, trying to work and care for their child, trying to be balanced while caring for their other children when the 18 needs more attention.....  My husband and I do not travel because of Rachel. We cannot get much babysitting help because people are afraid of having anything happen to Rachel on their watch.  We don't get invited to play groups.  Some relatives ignore Rachel at parties.....  Are the medical professionals just projecting their own fear and possible selfishness by saying that there would be no quality of life because they wouldn't want their quality of life compromised?

Some also like to use the "drain on society" argument.  One doctor even told us it wasn't worth the money to do any further testing on Regan's heart to be sure there was nothing to be done.  We tested anyway and, in doing so, the cardiologist discovered that, indeed, Regan did require an echo immediately after birth because he couldn't tell for sure if her aorta would be able to function or not.  If it had been good, he said she could have actually lived years with her heart deformed the way he thought it was!  We have fought for and gotten every medical intervention for Rachel that we could get.  Rachel and Regan both have given so much back to society - like faith, hope and love - things that money can't buy and things that society needs in order to fully live.  It is possible that what they have contributed far outweighs in value any money that has ever been invested in their well-being.  They contribute joy and food for the soul; things that money can't buy.

The three days we just had with our daughter Regan before she died were some of the most wonderful of our lives.  We wouldn't have traded her for anything.  Three days may not seem like much to some people and may not seem like they are worth all the effort we went through to have her in the first place or to ensure her well-being in our birth plan, but Regan taught us so much; especially about the courage and strength it takes to live.  Regan showed great courage.  And she brought out the best in us.  We are better people for having known her. She was able to understand and respond when I showed up in the NICU.  The nurse pointed out that she would immediately see a difference in Regan when I arrived and Regan heard my voice.  It was a good thing for Regan and for me.  I was able to look into her eyes and receive her love and she could look into mine and see that I loved her.  I sang to her, I rocked her, I sat up all night with her because she didn't feel good, I held her fingers wrapped around mine, I changed two diapers, I comforted her, I made memories with her....  I was able to be a mother to her - my God-given right and natural instinct.  If we had euthenized her because we mistakenly thought there was nothing of value to her short life, we would have missed so much. We grieve her loss deeply; how fortunate we were to have had her as long as we did! How fortunate we are to have had Rachel for nearly five years now.  She is such a joy to us and to everyone who knows her...always ready with a smile to brighten your day. In short, one just has to put their personal fears aside and spend some time with our kids in order to understand their value and know why they deserve life-saving medical intervention.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.