The day came for the amnio. As my husband and I walked into the hospital, we had no idea what was about to happen and were hopeful that the AFP test had been wrong and the amnio would find nothing wrong with our baby. A level II ultrasound was performed and the technician seemed to freeze when she scanned our baby's head. She looked at us almost with pity and then left the room. At that point, we had an idea the worst was about to come. Another ultrasound technician came into the room and proceeded with the ultrasound saying nothing to us.. not one word. The silence was eery. We were then taken to another room for the amnio to be done. The amnio itself was very scary. They had to reinject the needle several times as they kept extracting blood instead of amniotic fluid. Finally, they got the fluid they needed and the doctor said, "We will have the results in approximately two weeks and we will call you." That was it. It was over. The next four days seemed to last a lifetime and then at work, I received a call from my Ob/Gyn, not his nurse, not the receptionist, but my doctor. That alone scared me. He simply said, "I need you and your husband to come to my office right away." That was all I needed to hear. I knew something was dreadfully wrong with my baby. Obviously, I could not wait to go to his office. I prodded him until he finally spilled it. "Your daughter has Trisomy 18, a fatal chromosonal disorder," he said. "What? What does this mean?" I cried, still hopeful that maybe..... just maybe, everything would be okay. "It means she is incompatible with life." he said. I hung up in hysterics and left work after vomitting several times in the ladies room.
Three opinions later, we decided that we could not let our Daughter suffer any longer. Oh how we wanted her, we longed for her! I so wanted to see her alive just once so I could tell her how much I loved her but, that would have been selfish of me. On February 4th, I was taken to the hospital and the amniotic fluid was removed from my womb and replaced with saline. For two days I walked around in a daze, treasuring every bit of movement I felt knowing very well it might be the last I ever felt. When I had not gone into labor naturally after 48 hours, I was taken to the hospital and labor was induced. On February 7th, our sweet baby was born dead. Her abnormalities were easily seen. While I could not see the internal problems that she had, like 1/2 of a liver, 1/2 of a heart and not one drop of blood to her brain, I could see her long middle fingers, her caved in purple chest and the huge hole in the back of her head. To me, it was a sign from God that we had made the right decision. We had feared even after three opinions that the doctors might be wrong,... they weren't.
Thankfully, the hospital staff allowed us to hold our Daughter and we will always treasure the time we got to spend with her. We buried sweet Kaleigh on the 12th day of February, the day of the worst snow storm in 60 years in our state. It was not just the weather that felt cold and bitter. To this day, we do not regret our decision. We feel that God created our Daughter, Mother Nature made a fatal error, and we mercifully ended her pain. I spend many days now throwing kisses to heaven. Kaleigh will remain a part of our family for as long as we live and will always have a precious place in our hearts. We await the day that we will meet her again in heaven.
My husband and I had an awful time comprehending what the doctors were saying. How could this be true? "Are you sure?", we asked. Could there be a mistake? It just seemed so harsh, so awful. I clung desperately to any hope that Aimee might survive until all the tests were complete. I was willing to accept a less than perfect child. I did a lot of thinking about that. I had to carefully consider if there would be any quality of life for my baby. My defnition of "quality of life" you ask? Would this child ever walk, talk, play, have any joy or be able to learn? Or, would she live her life in the Neonatal Intensive Care Unit with tubes, medical procedures and operations? Even if she would survive the medical traumas, what could we possibly hope for?
This was so different from the gentle birth and warm welcome I pictured and dreamed of for my baby. When the tests were complete, I had no hope left. I was told that if Aimee would survive the pregnancy, the birth..the expected round of major surgeries (starting with open heart surgery), that her capabilites would be extremely poor due to the inherent chromosome problem, which simply was not fixable. The doctor said, (I will forever remember these words), "These children do not give back to families. Some parents say their child recognizes them when they come into a room, but I think these parents needto believe that." I realized that Aimee would never, no matter how hard we would have tried..had anywhere near a normal life. When I got back the genetic reports..they read that there is a 100% mortality rate in infancy for Trisomy 18. 100%! I think when the *reality* of this diagnosis had sunk in, I knew the right thing to do. What parent who loves a baby or child would *willingly* subject them to pain? Subject them to a body that would simply stop breathing a million times a day because the brain could not tell the lungs the right signal to breathe? Who would want someone, anyone they love to be *incarcerated* like that?
The whole situation was similar to disconnecting a terminally ill person's life support. The difference, perhaps..is that the parents who have had to interrupt (terminate pregnancies, *release* their children..) never had the opportunity to get to know and love their babies outside the womb. I wonder every day of my life..who was my Daughter, trapped inside that sick body? I decided to say goodbye sooner, rather than later. I chose to do what I thought would rescue Aimee from needless pain, since there was absolutely nothing I could do to *fix* her body.
It hurts when people think this was a choice of ease or convenience. There is no easy way to deal with a terrible prenatal diagnosis. Please don't judge people whose shoes you haven't walked in. We never wanted to be in this position, and would not wish it on you. If you can't understand, at least be kind. it does none of us any good, and does our children..living or deceased, no good.. to hurtle viscious insults and remarks and recriminations. The best thing most people can say to me is, "I'm sorry," because so am I, not for the decision I made, but for the loss of my precious baby Aimee.
Walk with me through the scariest nightmare you could ever imagine: March 13, 1997, the most exciting day of my life. "You are pregnant!" the nurse told me after I asked to have a pregnancy test at my doctor's office. I've always dreamed of having children. My dream was finally coming true. I started planning for my baby's future on that special day. Everything in my pregnancy was great, until the dreadful day my doctor called with the results of my AFP3 test results. He told me the results showed an increased risk of Down syndrome; our chances were 1/41. We struggled with the decision to have an amnio. I'm 25 and really didn't think anything could be wrong with my baby. We decided to have it for peace of mind. I never considered terminating my pregnancy, no matter what the outcome. I guess that is how you feel until you are faced with the idea of your child suffering!
When I went for the amnio, the ultrasound tech took forever looking at my beautiful little girl. I had a very scary feeling as she took hundreds of pictures, and never once smiled as she studied the screen intently. To me my baby seemed perfect in every way. My little Sydney!
I got the rapid results back in 4 days. When I heard my doctor's voice on the other end, I knew what he was going to say. "I'm sorry to have to give you this bad news. The results show an extra #21 chromosome." I just handed the phone to my mom, and curled up and cried, and I haven't stopped yet.
The next week and a half were the worst of my life. We spoke with a genetic counselor and did a lot of research. What was quality of life? Would Sydney be severely retarded with serious ailments like heart, digestive, and respiratory problems, or even get leukemia? Would she be able to enjoy life as an adult, if she was able to live that long? I thought about my own life and what makes it enjoyable. We finally came to such a heartbreaking decision that I couldn't bear to think about it. The decision we made was what I thought was best for my baby. I really felt deep in my heart that she would be happier with God. I hope and pray Sydney knows how much I love her and miss her. I really believe it would have been easier on me to have her and hold her and kiss her. The decision I made was for her.
We returned our baby to God on July 3, 1997. The night before I tried to stay calm and comfort Sydney. I prayed with her and told her what was going to happen, and why. I just lay there and cherished every little movement I felt. When I woke up in the recovery room I was hysterical. I felt so empty and alone.
The past 12 weeks have been long and lonely. The ache in my stomach is indescribable. I know that it will never go away. Every moment I think of her and long to be with her again.
A passage from Wendy Lyon's book A Mother's Dilemma, has helped relieve some of my pain. She refers to this "heartbreaking choice" as Tough Love:
"Tough Love means loving your child so much that you are willing to sacrifice your maternal longings and earthly needs to allow God's child to return to Him to whom he really belongs, leaving you behind to grieve your loss. And you know what? I say that takes courage!"
Thank you, dear Lord, for letting me spend 20 weeks of my life with Sydney. I will cherish the memory always.
Two weeks later I began spotting and took to bed to do all I could to save this child. Three weeks of bedrest did the trick and our baby was hanging in there. We began shopping, designing the nursery and decorating. I ate right, took my prenatal vitimins and I LOVED MY BABY!!
At 20 weeks we went in for our routine ultrasound absolutely excited. We took along our video tape so we could have a copy since we had been saving all his ultrasound pictures from the beginning. Halfway through the ultasound the sonographer left without a word. Five minutes later my OB doctor appeared and stated we have a serious problem. Your baby has severe hydrocephalus (water on the brain). The brain has not developed due to the water pressure and it doesn't look good. I broke down and cried. What could I do to save the baby??? He told me he was sending me to a specialist for a second opinion and that if it were his child he would induce labor to save it from what lies ahead for it.
The next morning we met with the specialist and had another ultrasound. I cried through the whole thing praying it was all a mistake. He confirmed our worst fears and more. He informed us our baby also had Spina Bifida as well as hydrocephalus. He said the extent of the hydrocephalus at this point in our pregnancy was severe and would only get worse. I asked him for a "Best Case Scenario." [He told us he could not predict the future but, if our child survived the pregnancy and all the surgeries to follow, it would be severly mentally retarded and, judging by the size of and position of the hole in the baby's back, would never walk or be able to control his bowels.] I then wanted to know what sex our baby was. He told us it was a little boy.
My husband and I left with our hearts in pieces and our souls empty. My husband called a friend from work that night and spoke to him about our results. Three years earlier he had a daughter born with the same birth defects and she lived for 6 weeks. His friend told him everyday he would pray she would die in her sleep so she would not have to endure another day of the hell she was going through to keep her alive. He told him of the surgeries and the excruciating pain she had undergone in her short 6 weeks before finally passing on. The day she died he wept.....not for sadness but because god had released her from the hell she was going through. He said he wished he had know earlier so they could have prevented it all.....meaning he would have interrupted the pregnancy like we now had the chance to do.
That night I cried for hours not wanting to make a decision. I slept with my tummy to my husband's back so he could feel Nicholas move through the night like we always did. We both cried with every kick and bump. I asked myself all night, "What do I do?? What is the right thing?" For me it would have been to continue the pregnancy and pray everyone was wrong. But for my son that would not be fair.....I loved him and because I loved him I took his pain.
At 6:00 pm February 28, 1995, I was induced. The labor was like it was with my other two children. They offered to put me to sleep due to the pain but I refused....I wanted to see my son enter the world like I had done for his brother and sister. On March 1, 1995, Nicholas Gregory was born at 5:10 am.....he was born alive and my husband and I held him in our arms for the 20 minutes his tiny heart beat. We cried the entire time and told him how much we loved him. At 5:30 am his heart stopped. My tiny angel never knew a second of pain.....only his short life of love. His tiny head was extremly enlarged and disfigured due to the hydrocephalus. His tiny back had a hole exposing his spinal column and spinal nerves. But still I thought of him only as beautiful. His birth defects were worse then predicted and I was told then by the nurse who worked in the Neonatal Intensive Care Unit I had done a courageous thing for my son.
We buried him in a cemetery and he had a funeral. We visit him often and love him always. My heart will forever ache for my son but I know he is in a much better place. I had a choice and I loved him enough to let him go. I choose to accept his pain and I will feel it for a lifetime. As I tell Nicholas' Story tears stream down my face. He was a very much wanted little baby.....and if I could have saved him I would have given my life to do so......but that was not a choice.....my only choice was to make his pain mine......and that it is......forever.
Some people call this murder.....I don't see it that way. When we have animals who are suffering and can't be helped we are kind enough to put them to sleep to stop their pain. And when our children scrape their knees we kiss the pain away. But my son was going to have pain even a miracle could not fix. So I did the only thing I could do to save him.....I gave him a lifetime of love in 20 minutes and he never endured 1 second of pain. I choose to endure his lifetime of pain myself.
I love you Nicholas.......Love, Mommy
My first thought was to ask the doctor if our child would be like the many functional Down Syndrome children that are out in the working world, some even in college. My doctor told me that most of those children/adults had a missing rather than an extra chromosome & thus half their genes were normal. This was not the case for our precious child. All of his genes were affected by the chromosome abnormality.
So I read everything I could find on Down syndrome. I talked to special education teachers and genetics counselors. I also grew up seeing first hand what life was like for a long time neighbor, so dearly loved & wanted, who had Down Syndrome. But you are right ... the one thing I didn't do when I learned of the diagnosis was talk to other parents of DS children. I didn't talk to parents who had interrupted Down syndrome pregnancies as well.
Why not, you ask? Because either way, the parents would be utterly convinced they made the right choice (if they had a choice). What mother carries a baby for 9 months and does not love it more than life itself? What mother could imagine what her life would be like without that child, no matter how severe the handicap? Obviously any parent of a Down syndrome child will love that child as much, if not more, than the mother of any child. They are such beautiful and loving children! How could such parents possibly envision their life without their beloved child?
Conversely, we didn't talk to parents who had interrupted. These parents had to believe that they, too, made the right choice. They had to believe that their child, had he/she survived, would have suffered greatly. They had to believe that God supported their choice. A good parent would not be able to live with the guilt & loss if they didn't believe these things.
So what pushed us over toward the interruption? Simply, advanced maternal age. This was our only child. We are in our 40's and there is no extended family & siblings to care for a Down syndrome child who might live to be 55 years old putting us at close to 100. Who would care for our child when we were elderly or deceased? What would become of him when mommy can no longer fix his pain? I remember so well how my late neighbor would sit and cry wondering who would take care of her Down syndrome son when she passed away.
And yes, there would be pain. Surgery would have been needed immediately upon delivery. The chances for his survival were fair at best. There would be the pain and stress that a disabled child would put on our marriage, too. The divorce rate of families who have children with disabilities is close to 90%. I grew up watching the pressure and stress that my neighbors endured in their marriage, too. My husband and I are in our second marriages and committed heart and soul to this marriage. We intend to stay married until the day one of us dies but we're realistic enough to know that there are no guarantees no matter how strong the commitment and how deep our love.
And there were completely selfish reasons for interrupting this pregnancy. We are not wealthy & knew that the financial commitment would be more than we could handle. We also knew that if we continued this pregnancy, there would be no graduations, weddings or grandchildren. There would be no one to be there for us when we are old, much less to be there for this child when he became an adult. My childbearing years were drawing to a close. I didn't have a second chance to know what it would be like to have a healthy child in my home.
I'm not a strong advocate of abortion. I've never joined a prochoice movement. I'm Catholic with deep religious beliefs & an overall feeling that abortion of a healthy fetus would be the wrong thing for me to do. I would never and could never have an abortion because of an unplanned pregnancy. So what is the difference between a healthy embryo and an embryo with an abnormal chromosome count? For the answer, I looked & prayed to God.
The night before we interrupted, I took a sleeping pill for the first time in my life and I prayed and cried and prayed some more. I wanted some sort of lightning bolt to hit me. To say, "Hey, Jane, you're doing the right thing." I wanted God to hold me in his arms and I wanted my baby to understand that our choice to return him to our maker was done purely out of love. I begged and pleaded with his soul to return to me in a healthy body. I wanted him to know that I loved him more than I loved myself.
No lightning bolt hit. No miracle came to tell me that I had done the right thing. When it was over, my baby was dead ... period. I grieved as any mother of any child who had died would grieve. This hole had been created in my life. A hole that would never go away.
Did God understand? Now, after so much time has passed, I know that He/She not only understood but when I prayed for he/she to to hold me, that I was held and loved along with my precious child on that awful day. I received love and support from my family and friends that God had given to me. God gave my child a beautiful soul and I released him from a body that was not completely whole.
One day, about six months after his death, I picked up a bag of candy hearts. You know the ones ... they have the little sayings on them. I was depressed, angry & miserable. I couldn't stop thinking about and missing my son. I was committed to eating the entire bag of candy. As I sat alone in the room, tears streaming down my face and the emptiness that only a childless mother knows, I asked out loud if my baby would ever find his way back to me in a healthy body. I randomly pulled a candy heart out of the bag. The candy read "yes, count on it". More tears ...
As I type this a year and a half later, lying beside me looking more like an angel than an infant, is my beautiful newborn son. His chromosome count was normal. His future limited only by his own desires. I know my firstborn heard my prayers and did come back. I know, too, that God is real and that he/she loves me. I don't need to ask for forgiveness. God held my hand that day in the long days, weeks and months that followed. He/She gave me the strength to do what only I can tell you was the right thing for my baby. No one, not those who supported my decision nor those who condemn the choice we made, can understand for they did not love my Down syndrome baby ... I DID! He was and always will be my son and forever will remain a part of our family.
Can I say beyond a shadow of a doubt that I made the right choice? I can say that I did make the right choice for my baby and my family. But was it what God wanted? I think it was as it was God who gave me access to the prenatal testing that enabled me to make the choice ... but do I KNOW? No .... and you know what? Neither do you!
Support Organization For Trisomy 18, 13 and Other Related Disorders
Chromosome 18 Registry & Research Society
Spina Bifida & Hydrocephalus Association
Information on Spina Bifida
Spina Bifida Links
Information on Hydrocephalus