Sherri's words

For a long time before Madison came into our lives, she was with me.  My little spirit, my follower.  We already had two children. Several times we'd discussed whether we'd have any more.  My husband was happy with two, but I always knew I'd have another.  I knew this spirit would find a way to be born.

When the opportunity finally came, I talked to my little spirit.  "You better come now.  You may not have another chance. . ."  Those words echo in me still.  On May 8, 1995, my suspicions were confirmed - I was pregnant.

We spent those first few months getting excited about the prospect of having another baby.  I started my prenatal visits right away, took my vitamins, and made plans.  Our daughters were thrilled and took advantage of the summer months by going with me to my prenatal visits.  Everything proceeded normally, at least on the outside.

I found myself plagued by thoughts that something was wrong.  This was not normal for me.  Both of my previous pregnancies went smoothly, natural deliveries and healthy babies.  But, I just couldn't shake this feeling.  The maternity center where I was going for my care did not require me to have an ultrasound this time because of my excellent history.  But, I found myself asking to have one while at my second prenatal visit.  The midwives were, as always, accommodating, but surprised.  Why did I want to have one?  I told them that I just had some uneasy feelings and that I needed to SEE that everything was okay.  I was scheduled to have one at 20 weeks on August 21.

The night before the ultrasound, I did not sleep.  I went with my daughter to her first day of school and helped her teacher.  I felt like I was walking in a fog.  I went home at lunch and fell asleep on the couch.  My husband woke me up and said it was time to go.  I almost convinced myself to re-schedule, but decided to go ahead with it.  We had to bring my youngest daughter so we picked up my sister-in-law on the way to watch her for us - a hidden blessing.

While in the waiting room, I sat nervously.  My sister-in-law asked me, "Aren't you excited?"  I replied, "No, I'm scared," surprising myself with my own words.  The nurse came and took us back.  The room was very dark.  I got on the table and the technician began the ultrasound.  Our first image - kicking feet.  I breathed a sigh of relief!  We asked if she could tell what the baby was.  She said, "Dad, I think you are going to have three girls."  I smiled at the thought of buying frilly things again.  She began taking measurements.  She looked at the spine and stopped. . ."Did you have an AFP test?"  Oh God.  I knew it.  I knew exactly what she was asking.  No, I had not had the test and I could see on the screen that something didn't look right.  The bones were too far apart.  My mind was racing. . .I answered her, calmly.  My husband did not know what she was saying.  She kept looking and looking.  I felt sick.  She said, "I am having trouble seeing the baby's head.  I am going to go get the internal probe."  I said, "You know, you're really scaring me."  She said, "It's okay, I'll be right back."  I didn't say anything to Bill, but I knew.  I knew there was a problem.

She came back in and inserted the probe.  Then mumbled words. . .oh. . .there's a problem with the baby's head. . .incompatible with life. . .see there, where it stops above the brow. . .i'm so sorry.  I screamed, "I knew it!  I knew it!  It's my fault. . ."  Bill was hysterical.  I lost it completely.

They brought in a perinatologist and we had to sit and watch as he confirmed the diagnosis.  Anencephaly (absence of the brain and cranium) and Spina Bifida (open spine).  There was no hope for my little daughter.  She was going to die, the only question was when.  They gave us our options. . . most likely if she were carried to term, she would be stillborn and I would have to have a cesarean - I was told, "There is not a doctor in this hospital that would let you deliver vaginally." (I now know that isn't necessary, but at the time I was still in shock and took them at their word.)  If she were born alive, we could choose whether to have her placed on life support OR do nothing and watch her struggle to breathe until she died, but even with that choice, we risked being overruled by which ever doctor happened to be in charge at the time. They could give us no guarantees that no heroic measures would be taken.  If she were alive and placed on machines, she could remain in a vegetative state for a while but would most likely die quickly as a result of infection. Her spine was completely open, including skin, all the way down her back. She would never open her eyes, make a sound, or feel a touch.  She would only suffer and die, possibly alone or attached to machines.  That was not a choice I could live with.

A choice I could live with. . . those words may appear to sound selfish, but I assure you they are not. I would have let them cut me from head to toe if it would have saved her life. I'm a mother. I love my child. I didn't want her to suffer, let alone die. But that choice was already taken from me by anencephaly.

The only other option was to interrupt the pregnancy.  I knew from the moment we made the decision that it was the right thing to do for us.  As a mother, I could not justify allowing my child to suffer when it was unnecessary.  As a dear friend said to me, "What happened wasn't her fault.  She deserves a death with respect and dignity," and from that moment on, I knew we would do whatever it took to give her that.

We had 5 days until the interruption.  With support from friends, family, and our doctor, we decided we would labor and deliver her so that we would have the chance to hold her and say goodbye.  As difficult as those 5 days were, we treasured them.  We knew they were our last moments with her and we wanted to do everything we could to prepare for her.  We named her Madison Anne.  Madison was a name I had picked out earlier, and Anne came to me in a dream.  (Ironically, she is buried next to her great-grandmother, Anna.)  We bought a necklace for her with a charm that has an angel on it and says, "Guardian Angel, protect us," and bought me one to match.  We also got a dress for her to wear and a doll.  Our daughters made pictures and Bill wrote a letter to her.  We told our friends and family the truth about what was happening and received so much love and support.  We were so grateful for the understanding because we were in such an impossible situation, working purely on instinct with our family's best interest at heart. . an experience only those who have been there can truly understand.

On August 25, I walked into a nightmare.  I wanted time to stop and start going backward.  I did not want to take another step forward, but somehow I found the courage and strength to do it.  We made it to the hospital and my labor was induced.  Nothing was done to Madison. . .just me.  14 hours later, she arrived and the nurse bathed and dressed her and brought her to us.  Bill held her and gave her to me.  I was so shocked at my reaction.  I felt happy to meet her at last, my little spirit.  We held her hand, noticing how long her fingers were.  She also had big feet, just like her mommy.  I laid her on my chest and felt her warmth sink into my skin, then I fell asleep with her there.  Bill took a picture of us together, both at peace.

When the time came, we placed her in her casket along with the things we brought for her.  We carried her home and placed her on our bed and sat together before going to the cemetery. At the burial, we released balloons and everyone there took a flower from her spray.

In the days since, I have never faltered from my thought that we did the right thing for Madison and our family.  I have done alot of reading, corresponded with other parents who have made the same choice, participated in pro-life/pro-choice discussions, and even had a friend who chose to continue her pregnancy with a baby with anencephaly. . .and every experience for me has done nothing but solidify in my mind that WE made the best decision for OUR child.  I would never try to assume that my decision is the best one for every parent. We're all different, come from different backgrounds, experiences, etc. Regardless of what decision is made, it is a decision made out of love. And I know that there is not a person on this earth who could have loved and wanted our baby more than we did. Parents who make the choice to continue their pregnancies with babies with anencephaly feel no differently than I did about my child. We all lost our children to this devastating defect, just some of us earlier than others.

But more importantly, Madison's life did have a purpose.  In the 5 short months she was here, her life touched so many people.  She affected the world more than we will ever know, for each person who knows her story is changed. . .like a drop in a pond that creates thousands of ripples that go on forever. . .her memory will, too.  I can only hope that my own life will do so much.  And I thank God everyday that I was allowed to make this choice for my child, who never knew pain or suffering.

Our lives have continued.  We have a new member in our family - a much wanted son who brings joy to us everyday.  I am so happy to be blessed with another child, but at times it is bittersweet.  As I watch him grow, I see all the things I never got to do with Madison. . but, she is still with me.  I sense her watching over us, my little spirit, my angel, my peace.

 I would like to thank some very special people
who helped us more than they will ever know.

Nancy - Your willingness to share Brigitte's life with me gave me the courage to see and hold Madison. . .the gift you gave us is beyond words.  Our baby angels brought us together, but our friendship keeps us going. . .

Barbara and Lisa - I am so thankful that there are people like you in the world who have the courage to sit and hold a parent's hand when they have lost a child. . .what a blessing you are.  Thank you both for carrying us through our darkest days and sharing in our joy.

Maribeth - Nancy first put your newsletter in my hand and it changed my life.  You will never know the comfort you have given parents like us. . .to know that we are not alone.  You also provided us a sanctuary to share our grief and help each other to heal.  You have shown us all how much just one person can do. . .and we will forever be grateful.

To our family who swept in and took care of our children, cried with us, and never let us think that our loss was ours alone. . .thank you for being there everyday.

To our friends who were with us, supporting us and listening, listening, listening.  You gave us a place to cry and laugh and never judged.  Your acceptance was your greatest gift.

~ ~ ~ ~ ~ ~ ~ ~

And to all the parents on the listserv. . . for opening your hearts to us, for crying with us, and for hoping with us.  And all the angel babies. . .who changed our lives forever.

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