Will’s Story

In the spring of 1998, when I was 41 years old, the Lord surprised my husband and me by allowing us to conceive a child. To say we were thrilled and overjoyed would almost be an understatement.  Corin, Dani and Aaron (our now thirteen year old) shared our excitement.  My pregnancy was a tough one, accompanied by a great deal of morning (all day!) sickness.  I had terrible asthma that spring and summer, and worried about the medications that were required to keep me breathing.  While I was worrying aloud about these medications to our general practitioner one day, he very wisely and gently reminded me that it was actually good for the baby that I keep breathing!  You have to love common sense like that!

Other than those complaints, my pregnancy progressed along nicely.  Baby grew well.  My measurements were always right on.  We heard baby’s heart beat quite early on.  We were happy to learn at the routine ultrasound that our baby was a boy.  His first and middle names would be William Brewster, as he is a direct descendant of William Brewster who came to America aboard the Mayflower.  We happily continued planning for the arrival of our baby in January of 1999.

I was blessed, at the time, with a very pro-life ob/gyn.  He was a strict Roman Catholic whose family had immigrated from Africa.  His grandmother had been the village mid-wife and his mother had followed in her footsteps.  He was a soft-spoken, very kind man, and I trusted his judgment.  When the time arrived for the testing that was recommended for mothers over 35, I declined the test, just as I had done a few years before when Aaron was born.  Understanding that my husband and I would never choose to end the life of our unborn child, the doctor let us know that advance knowledge of certain genetic conditions could actually be beneficial at the time of the child’s birth.  For example, a child with spina bifida could actually be spared additional spinal cord trauma if it were delivered by C-section.  Likewise a child with other genetic conditions could be met with the correct specialists in attendance to assist with those crucial early minutes.  His arguments won me over and I had the test.

Then the phone call came.  The genetic counselor on the phone was as cool as they come.  I don’t fault her for that.  I’m sure that her job of calling women to let them know that their tests have come back positive for one thing or another is a very, very difficult one.  My husband was home that day, and, as I recall, we were all sitting at the table having lunch when the phone rang.  The genetic counselor told me that day that the tests had come back indicating that the baby I was carrying had Down’s Syndrome.

I cried.  I cried a lot.  Please know, I knew that my age was a factor that could lead to a baby with Down’s.  In my heart of hearts, I knew that God would send us the exact child that he had planned for us and that that child would be loved and nourished and accepted no matter what.  And yet, my heart ached for the child in my womb. Would he have a lot of physical ailments?  Would surgeries be a part of his future?  And his future, what of his future?  Yes, I would love this child just as I loved my other three, but there is a grieving process at being given news like that, and I grieved.

The next day the genetic counselor called back, as she had said she would, to schedule a very intensive ultrasound procedure and appointment with a geneticist.  During this special ultrasound, the technician and doctor would be looking for problems with my baby’s heart and digestive system, taking lots and lots of measurements, and checking for any other problems a Down’s Syndrome baby might have.  The appointment was scheduled, my husband took the day off and we went.

By the time the appointment arrived, our grieving had stopped; but our praying had not.  We prayed for God’s will.  We prayed for strength for ourselves.  We prayed for our unborn son.  We prayed, and prayed and prayed.

The genetic counselor met us in the waiting room and introduced herself.  She was pleasant enough.  The ultrasound technician was a very pleasant man, whom I remember feeling very comfortable with.  My husband was allowed to be in the room the entire time the ultrasound was being done, and the counselor sat close by explaining why certain things were being looked for, why particular measurements were being taken, etc.  I can remember how wonderful it was seeing my baby on the ultrasound screen again!  There he was – active, moving about, heart beating.  We even caught a glimpse of him sucking his little thumb!!  The measurements seemed to be taking forever.  The counselor and the ultrasound technician exchanged some medical gibberish quietly between themselves.  The technician printed up some pictures with his measurements and markings on them and the counselor left with them to have the doctor check them over.

The technician was obviously trying very hard to catch Will doing something.  I asked him what he was watching for.  He explained to me that Down’s Syndrome babies are known to have tightly clenched fists in the womb.  He had seen Will’s hands open many, many times, but my baby was wide awake and very active.  So far, the technician had only been able to snap a picture of his hands when they were clenched.  Finally he gave up and said he was going to go to where the counselor and doctor were meeting to just verbally let them know that this baby’s hands did, in fact, open quite often.  On his way out, and against all medical protocol, he put his hand on my shoulder and quietly said to my husband and me, “looks like a healthy, normal baby boy to me”.  (I still thank God for that man!)

The next hour or so we spent in the genetics department being “counseled” by the genetic counselor.  She showed us pictures of normal DNA strands and abnormal DNA strands.  She told us that while our baby’s physical condition looked very good, there was no denying the fact that the initial test showed Down’s.  She wanted us to be sure that we knew all of our “options”.  When we told her that there were no “options” for us, she only redoubled her efforts, letting us know the “burden” a handicapped child could be to “older” parents, etc.

Her redoubled efforts only intensified our rebuttal to everything she could say to us.  She kept referring back to the initial test that showed Down’s.  At some point in time I asked her what it was in the test that made her so certain that our baby would be a Down’s baby.  I’ll never forget her words.  “The test shows a genetic abnormality that we normally associate with Down’s Syndrome”.  A genetic abnormality?  I mentioned that I had cervical ribs (an extra pair of ribs that appear above what are normally considered the first set), and that I’d inherited that from my mother.  I had to ask, “Wouldn’t that be considered a genetic abnormality?”  She squirmed, said that yes, of course that would be a genetic abnormality, but that we just didn’t understand.  When I pressed for more information to make it more clear to me, she finally conceded that genetics was still an imperfect science.

At the end of it all, we spent the last few minutes in the office of a geneticist with a really long title.  He had read the counselor’s notes from her conversation with us, and simply said that it appeared to him that we had no qualms about having a child with Down’s Syndrome and he just wanted to know if we had any questions. We did not.

The months passed, and on January 23, 1999, our William Brewster was born.  He was quite a bit past due, and there was a lot of meconium in the amniotic fluid.  So much, in fact, that the attending pediatrician was called in for his birth, and he was whisked from the ob/gyn’s hands so that the pediatrician could suction out his lungs and airways.  I did not see him, but my husband tells me that our baby was quite gray when he was born.  The pediatrician worked on him for a good long while.  I asked once why he was not crying, and the pediatrician very calmly replied that he couldn’t because he had a tube down his throat.  Funny thing, even that did not cause me to panic.  I had an overwhelming peace and was just patiently waiting to hold my son for the first time.  After some time, I was given my beautiful, pink, baby boy to hold.

However, William did not nurse well.   He latched on, but after a gulp or two; he was done.  The nurses gave me all the normal encouragement and instructions, but I kept telling them that he just didn’t seem to be hungry.  They assured me that he had to be hungry, and gave more instructions and even brought in a bottle of formula for him to try.  Guess what?  Mom’s usually right!

The next morning, my little baby threw up dried blood.  Quite a bit of it.  He wasn’t hungry, because his stomach was full of blood!  He was whisked out of my room, and I was not allowed to follow.  I frantically called my husband at home, and he and the other children came as quickly as they could.  It turns out that the pediatrician had worked so hard at clearing the meconium from Will’s airways and lungs, that he had actually scratched his throat a bit in the process.  The blood went into my baby’s tummy and pooled there until he vomited it up.  When they finally brought my baby back to me, he was ravenous! He began nursing normally right away.

Our son was about two weeks old when we knew, for certain, that he did NOT have Down’s Syndrome. Remember those clenched fists in utero?  He continued to have rather tightly clenched fists for several months until we realized that he’d done it so long in the womb that his little muscles and tendons were tight in his hands.  It took about a month of my gentle working and massaging those tiny little hands until he could open them fully.  Many Down’s people have what is known as a single palmar crease.  Look at your hands.  Most of us have two horizontal lines on our palms.  It’s not uncommon for Down’s children to have only one.  Will has one crease on one hand and two creases on the other!  Our pediatrician told us that one of the staff pediatricians has single palmar creases on both of his hands!  Genetic abnormality?

If you’ve been a reader here long, you know that Will has what one commenter recently referred to as “an alphabet soup” of disorders.  He has Tourette Syndrome. He is OCD.  He has some non-diagnosed processing disorders.  And yet, all of these are just as likely to have been caused by the lack of oxygen at his birth as by any genetic factors.

Why am I sharing this story with you today?  Today I read an article in the New York Times about Down’s  Syndrome.  The article quoted a source that indicates that 90% of all babies who test positive for Down’s in utero are now aborted.  I was so surprised and saddened by that statistic!  So many babies!  And yet, I cannot help but wonder how many of these babies do not, in fact, have Down’s Syndrome. My heart breaks for the thought of so many, many babies who may, or may not, have Down’s being murdered for the convenience of their parents.

My story is not unique.  I have a friend who was told her daughter was dead and was encouraged to have the “fetus expelled through medical procedure”.  That girl is now a healthy, bright junior in high school!  I am not trying to bring any sort of bad report about the medical community.  I am thankful for our advanced medical diagnostic capabilities, and for the skill and expertise of our physicians.  However, they are only human, and all humans are fallible.  God, however, is infallible!  God knows the very number of the hairs on our heads.  He knows the number of our days.  He knows the number of chromosomes in our DNA strands and he knows each of our “genetic abnormalities” that make us all so unique!

My intention today was not to start a controversial discussion.  My intention today was not to raise the hacklesof those who read my blog who do not share my faith.  My intention today was not to question medicine or medical ethics.  My intention today was simply to share Will’s story.

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3 comments to Will’s Story

  • Your story is truely amazing! I’m with you, I would never kill an unborn baby! We only had one biological daughter and then we adopted a brother and sister about 6 years ago. They are both ADHD and our son is also OCD…I think that one is harder for me to “deal” with for lack of a better word. I try to keep him focused without causing a new obsession! But, the Lord saw fit to put these wonderful kids in our home, instead of giving us more biological children, and we will do our very best to raise them to be able to function well in society. somedays it is hard but I know the Lord will see us through. They have both come a very long way in the short time they have been with us!

    • Monica – What a blessing to have been able to adopt children into your family. What a beautiful picture of God’s love for us! Will has OCD, too, and it’s interesting to watch what sorts of things become obsessions and which do not. And I’m always surprised!

  • I too, loved your story. A close friend of mine was also told that her child had Downs Syndrome and was pushed to abort the pregnancy. She stood her ground. She and her husband made preparations for their third child. She quit her job so they could focus on the boys. Once he was born, he showed how wrong those tests can be. He is now 12 years old and at the top of his class. No disabilities at all. I have a 13 year old boy who has a chromosome disorder and is non-verbal, mentally challenged (has the mental abilities of a 8 year old and may not do better than a 15 year old) and has low muscle tone (he did not learn to walk until he was almost 6). I did not have the test done and do not regret it one bit. We knew that whatever the test showed it would not matter. Yes, there are days when I cry for what could have been. Yes, I cry with not doing enough for my son. But I laugh with his silliness. I laugh when he is caught stealing my freshly baked cookies. I love that he is in my life and love that God gave me this boy to show me nothing is perfect in this world. God also gave us 2 girls, and they too love their big brother and now know that not everyone is “normal”. Only expressing my feeling and my beliefs. I do not pressure others, life is to short.