Seth: Love, Hope, Hydranencephaly

Seth is a remarkable child, who was diagnosed with hydraencephaly while in utero.  Despite the opinion of 13 doctors, he did not die right after birth!Seth2

As Seth’s neighbor explained to us, “Seth is missing 95% of his brain or more. By the miracle of god and the child’s will to prove everyone wrong he celebrated his 4th birthday this year (2017). Unfortunately with the child missing so much of his brain he cannot walk, see, talk, and has very, very limited muscle control, on top of all these problems he also has seizures  through out the day and night.”Seth3

Here is a little bit of Seth’s story, as explained by mother Michelle, in her Christmas message.

Merry Christmas to the wonderful Angels God sent to bless Seth and me.  I am writing to share a bit of our story with you and thank you for blessing us with your kindness and generosity this Christmas.

It was at 15 weeks when I was told my unborn child had something very wrong and was told he had hydrocephalus, or water on the brain.  When an option to abort my unborn child came up I couldn’t do it.  I had wanted a family all of my life and this child was part of me.

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After meeting with lots of specialists and doing research, the plan was for Seth to have surgery after birth to the fluid around the brain allowing it to expand.  The hospital in Boston has the most experienced neurosurgeon and I flew there at 34 weeks.  Seth was born at 39 weeks.  I named him Seth after Adam and Eve’s 3rd child.  A few days after birth, Seth had surgery to remove the fluid.  There was a lot of waiting and a lot of tests after the surgery to figure out why his head was still full of fluid.  Finally, at a meeting with 13 doctors they showed me Seth’s MRI, which showed he was missing his brain and fluid was in its place.  This is called hydransephaly.  I was told it was extremely rare and that he would not survive.  I had him baptized and we spent two weeks at the hospital in Boston.  I decided to fly us back home so my family could meet him and help plan his funeral.

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Seth is a true miracle!  Born missing his brain and expected not to survive, but this courageous boy just turned four!  Not unlike the miracle of a son born to a virgin who was born our Savior to save those who believe in him.

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We have had many challenges these last four years, but I want to share what a miracle my son is.  He is the most beautiful boy in the world.  How blessed and proud I am to be him mom.  No ounce of sin in his soul and he defies the odds of needing a brain just because doctors say he does.  But God has this little boy here to prove miracles happen!  Believing is important and even when you are in the dark and can’t see; trust that God is with you (I know, easier said, than done.)

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When I start to doubt, God brings someone in our lives to remind us that we are His children, all of us!  Those of us that are born with no brain, or geniuses, short ones, bald ones, rich ones, thieves, drug addicts, divorced, or most beautiful,  strong in faith or those lacking, even the red, yellow, black or white.

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I could go into the details of what you have done and the goodness it brought in our lives but I truly believe you know what it means to us and why your hearts called you to bless us in this way.  All I can say is praise God!  And thank you so much!  You have a lifelong memory in our lives.  Someday I hope to repay another with you in my heart.

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Seth in Therapeutic Merry Muscles Exerciser. Love & Hydranencephaly!

Seth has defied the prognosis for hydraencephaly given by those 13 doctors!  Michelle has a strong faith, loving heart, and cares for Seth full-time at home.  Because of her limited income,  a very kind neighbor located and purchased a Merry Muscles Therapeutic Exerciser for Seth in 2015, which he has used for over 2 years, and really enjoys.   His exerciser has special “wings” on the seat, to give him the needed head support.  There are many straps to adjust for comfort and growth. Make a Wish has now given Seth an Aqua Creek swim therapy spa, but he needed a child-size seat to fit on the lift that holds him in the pool.  A special Merry Muscles aqua seat has been made for Seth, which he will be testing.

Seth’s story can inspire us all about the difference made by love, kindness & faith!  He has his own Facebook page:  Seth’s Journey with Hydranencephaly.  Soon we will put more pictures of Seth on this page too!


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