In Memory and Honor of
Jordan Arella Coulombe
born on January 1, 2002

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Jordan's Story

"Let the children come to me; do not prevent them, for the kingdom of God belongs to such as these."  Mark 10:14

The following story portrays the life of our beloved daughter Jordan.

Although we grew up together and had known each other for about fourteen years, we didn't have our first date until September 28, 1996. It was a crisp, fall day and up North to Castle in the Clouds we went for a romantic retreat. By the end of the day, we knew that we were meant for each other and felt our new life together start to emerge. During the next eleven months, we had grown so close and our love for each other had become so deep. We shared so many dreams and goals and loved to do everything together. Not only were we madly in love, but we were best friends. And on August 23, 1997, we were engaged to be married.

While planning the wedding, one issue that was raised that neither of us ever really talked about was our faith in God. We both were raised Catholic but hadn't received our Confirmation sacrament nor were active in the church. After discussing in depth the role in which we wanted religion to play in our lives, we became parishioners of a nearby lively parish community and made our Confirmation together before we were to be married. Finally, on September 11, 1999, we stood at the altar proclaiming our love for each other and for God and became husband and wife.

We decided to wait awhile before we started a family, as we wanted time to enjoy each other in the Newlywed stage. As the months past, we grew even closer to our faith. We loved going to mass and became quite active in the church ministries. More and more we realized just how important God was in our lives and how much we needed Him in our marriage.

As the holidays passed in the year 2000, we then started planning for our first child. And on April 26, 2001, the pregnancy test was positive! We were so overjoyed! Of course we felt all the normal feelings that came along with the impending responsibilities of having a child - scared, anxious and overwhelmed - but nonetheless, we felt very blessed to have created a life that from the moment we found out, we loved so very much.

We had a lot of fun telling our family and friends and they were so excited and happy for us. This little baby had already changed us in so many ways and the feelings of new parenthood were amazing. For the next few months, we enjoyed reading pregnancy books, thinking about baby names, planning for the nursery and imagining what our little one would look like. These were times of our innocence and unbroken hearts.

We had a routine ultrasound scheduled for July 31, 2001. We were about eighteen weeks along at this point. Little did we know that this day would be the start of our worst nightmare imaginable. The beginning of the day was so exciting though. We would be seeing our baby for the third time on ultrasound, but this time, he or she would be big enough for us to see moving around and to identify his or her organs and limbs. This ultrasound was suppose to be the one that put our minds at ease that everything with our baby was OK.

At 3 p.m. we met with the technician and were to have a follow-up appointment with our doctor. At this point, we decided not to find out the gender. As soon as we saw our baby on the screen, we were in complete awe. And what an active little one we indeed had. His or her miniature arms and legs were moving and kicking so vigorously. Words can't describe the elation we felt at that moment. Our love for each other had truly made a miracle.

Because we saw what we believed to be a normal, healthy baby, our oblivious happiness continued throughout the entire ultrasound. The technician gave us no indication that there was something terribly wrong with our child. After she finished taking pictures of our baby, we were moved to another room to await our doctor's visit. We were still on Cloud 9 and talking about our little sweetheart when she came in. She sat down and before we had a chance to say much, she immediately said that there were some "concerns" with our baby. Our hearts were going a mile a minute as we tried to comprehend the words that she was saying. She described how our baby had clubbed feet and that the left forearm had not developed properly. She strongly suggested that we have another ultrasound done in Boston, MA for a second opinion and a genetic amniocentesis. We probably asked a few questions, but the conversation was such a blur due to our extreme shock. We couldn't believe what we were being told. In hindsight, the worst part about it was that we didn't even know the half of it yet. All we knew was that our baby had some physical deformities, which was devastating enough. We left the office in tears and with feelings of sadness for our innocent baby and a sense of betrayal by God.

What was happening? Why did our baby have to be afflicted with such problems? Why did God let this happen? These were some of the questions that went through our minds and finding the answers seemed impossible. We could only hope that the next ultrasound proved the first one to be wrong and that our baby was positioned in such a way that made it only look like there were deformities. Realistically though, we knew that wasn't the case.

We took some time off from work because we knew there would be more appointments to come. We headed to the ultrasound in Boston a few days later. The whole way there, we couldn't help but think of how we would care for a physically handicapped child, what types of surgeries were available for such anomalies, how we would afford these surgeries and how limited our child's life would be with such handicaps. Of course we would love our baby no matter what, which we already did, but we knew how cruel other children could be and how society could sometimes have hang-ups with embracing the disabled. Life is hard enough without having these types of problems to begin with. How sad we were for our baby and how scared we were for ourselves.

We arrived at the hospital with so much anxiety in our hearts and stress on our minds. It felt like hours in the waiting room, but really we were seen pretty quickly. Nothing could ever prepare us for what we were about to hear about our baby. After the ultrasound technician took some initial pictures, the doctor came in. We were all quiet as she examined our baby on the screen. And as we watched his or her beautiful image, the doctor began to tell us of the devastating truth. Due to the particular pattern of anomalies that were observed, she believed it to be a chromosome disorder called Trisomy 18 (Edwards Syndrome). Later explained to us by a genetic counselor, this meant that at conception, there was a faulty chromosome 18 distribution. As a result, our baby had an extra chromosome 18 in all his or her body cells. For some unknown reason, the chromosome 18's didn't separate as they should have.

We sat there in total horror as the doctor explained the apparent diagnosis. In addition to our baby's clubbed feet and deformed arm, he or she was found to have clenched hands, low body weight for gestational age, cysts on the brain and most severely, a congenital heart malformation where there was a large opening between the lower chambers that prevented the heart from pumping blood correctly. We tried to process in our minds once again what was being said as she went on to tell us what all this meant for our baby's future. Because of this condition, it was expected that our baby would not make it to term. If he or she did and was born alive, our baby would not survive very long. We were told that about 50% of live born Trisomy 18 babies die within a few months and 90-95% die by the age of one. Congenital heart disease, feeding difficulties, central nervous system problems and an increased susceptibility to infections were major causes of death. We were also told that if our child did live, he or she would be severely mentally disabled.

After all this was said, the doctor gave us a few minutes alone. At the close of the door, we both burst out crying. What just happened here? How can she tell us our baby is going to die? How dare she? They must be wrong. How can we let our baby just die? They must be able to do something. Our baby looked so perfect on the screen. We just couldn't believe it. We tried to get a grip when the doctor finally came back in. She continued talking with us and said she supported our regular doctor's recommendation to have a genetic amniocentesis done immediately to confirm the most likely prognosis.  

We left the hospital in a complete fog. When we returned home, we were both at a loss for words. We were overwhelmed with sadness and anger, not to mention the weight of all the information that was just dumped on us. No words can ever describe what we were feeling. In one split second, our lives had changed completely. We were no longer the same Greg and Alissa that we were just a few days before. And still, somehow we were suppose to make sense of all this. The thoughts we had on the way to Boston of our child's physical disabilities seemed so insignificant. What we now faced was so much bigger.

After lots of thinking and long discussions, we ultimately decided to have the amniocentesis done. This was a very hard decision because there was a higher chance of a miscarriage that we were afraid to take. But we really needed to know for sure what we were dealing with. Thankfully, when we went into the doctor's office for the procedure the next day, there were no complications. We were told that it would take approximately ten days to get the complete results back, but preliminary results would be available for our appointment with the genetic counselor the following week.

The days preceding our appointment were very exhausting. We cried so much but we were also still in shock and somewhat in denial. Although we knew this had to be happening for a reason, the anger we felt was so intense. It was so frightening to know that our baby could pass away at any time. And if he or she lived through birth, the agonizing scenarios were endless. Our visit to the geneticist was much needed to get all the facts straight in our minds so we could start making informed decisions about our baby's care. Deep down, we had no doubt that our baby did have Trisomy 18. The doctor in Boston was so sure of it and they are not called specialists for nothing.

Finally, the day of our appointment came. At this point, what we already knew was starting to sink in. As we expected, the preliminary results from the amniocentesis proved to be consistent with full Trisomy 18. After speaking to the geneticist for over two hours, we learned so much about the impact of chromosomes and the disorder itself. We also learned of all the different things that we could expect as a result of this illness. We were reassured that nothing we did or could have done caused this for our baby. Thank God because we never would have been able to forgive ourselves. We were sent home with a whole bunch of reading material and fact sheets to review. Also, from the amniocentesis results, we decided to find out the gender of our baby. We felt that we wanted to know our baby the most we could while it was still possible. We wanted to be more personal and call our baby by name.

It's a girl! Regardless of the traumatizing facts of our situation, the feeling of finding out if our baby was a boy or girl was as if everything was normal again for one split second. In that second, so much joy came over us in discovering that we had a daughter. It may have seemed trivial to others under the circumstances, but for us, knowing that we created a little girl was probably one of the only luxuries we had during our time of pain. It was something positive to focus on in the months to come.

We decided to name her Jordan Arella. We had said even before we started our family that we wanted our children to have biblical names with special Christian meaning. 'Jordan' is the name of the river that John the Baptist baptized Jesus in. We agreed on this name for a girl even before we were pregnant. As it turned out, the importance of His baptism was especially significant in relation to our daughter's life because Jesus submitted Himself entirely to His Father's will. And it seemed to us as though we were being called to do the same. As hard as it was, we needed to trust in God's plan and in His continued presence throughout our time of need. 'Arella' means "messenger; angel" in Hebrew. And how true that was. Jordan's life brought a special message to all - a message of faith, hope and love.

The challenge of preparing for our daughter's birth and death at the same time was very draining. We felt so helpless because there wasn't a thing that we could do to protect her from this adversity. Instead of preparing a nursery, we were preparing for her funeral. Not knowing when she would pass away made us fully appreciate every day we had with her. And by this time, she had become more and more active. Just as other parents, we were so overjoyed when we would feel her movements and kicks. At least it would start out like that and then we would feel sadness because we knew it could be the last time we would know her alive. Still, we tried very hard to treasure her every minute.

We found it hard to be out in public and deal with all the comments and questions from people who noticed that we were expecting. Sometimes, depending on how strong we felt at the time, we would share our situation with them. The reaction of some suggested that we should just end Jordan's life, which was very upsetting. Thankfully, most people were extremely supportive and valued our daughter's precious life as much as we did. The term "you are so strong" was heard often, although it didn't feel like it most of the time. Focusing on our career obligations was also an incredible challenge. But we had to persevere, at least for Jordan's sake. Just as every helpless child does, she relied on her parents to be strong for her and care for her unconditionally.

October and November were the months in which we made all the major decisions for Jordan's care for during and after her birth. Since she had a strong heartbeat at all our weekly checkups, we were really hopeful that our little fighter would be born alive. Between meeting with a neonatologist, having numerous ethical consults from an out-of-state Catholic medical institute, speaking to our priest and having on-going discussions with our doctor, we were able to create an extensive birth plan. With their compassionate guidance, we closely examined the benefits versus the burden that life support would bring to Jordan. We were careful not to make decisions on our selfish behalf, but only in all fairness to her. The most important goal of ours was to give her the best quality of life possible without any suffering.

Although we had an incredible network of people praying for Jordan's health in hopes of a miracle, we knew deep down that this was meant to be. God put all the perfect people in our path to help us make all the responsible, ethical, life-giving decisions that we needed to make. All we wanted was for her to be born alive so we could bond with her before she left us. We wanted so badly to meet her face to face, hear her cry and look into her eyes and tell her how much Mommy and Daddy loved her and how very special she was.

One of the more difficult things we had to do was purchase our gravesites. We knew we wanted Jordan to be buried next to us and so we purchased three plots, side by side. By doing this, we not only had to come to terms with burying our first child, but we also had to come to terms with our own mortality. And at the ages of only 26 and 30, it was very hard to do. We found a beautiful area underneath a maple tree at the cemetery affiliated with our church. We were at least at ease with knowing that our final resting place would be very peaceful.

Our family and friends were so supportive and thoughtful throughout our entire pregnancy. We received so many special and personalized gifts for Jordan. Cards came in the mail practically everyday reminding us of how much the three of us were loved. The phone rang off the hook with people who were just checking to see how we were doing and if we needed anything. Their continued love and support gave us the courage to get through each day.

While we continued to enjoy and find laughter in her frequent antics in the womb, we became more aware of our due date that was quickly approaching, December 29, 2001 to be exact. We now were faced with the holiday season. We made it through Thanksgiving and believed that Jordan really enjoyed the huge plate of turkey with all the fixings that was passed on to her. We made it a point to read to her, tell her stories, rock her and play her music through headphones. We talked to her and continuously let her know how much we loved her. We blessed her with the Oil of St. Joseph and said the Lord's Prayer and Hail Mary over her every night. We did everything we could to make her feel very loved and cherished in the womb. We sensed that she was very happy in the comfort of the only home that she would know here on Earth, as we later discovered.

Christmas time was now here. It came full of mixed feelings for us. We were very sad because we knew what the final outcome of our child's life would soon be and also frightened because the series of events that would lead to her death were unknown. We tried to keep the spirit as much as we could. We bought a stocking especially for her and ornaments with her name and year engraved. We played Christmas music and decorated the tree. We also recognized that we were about to give birth to a very special baby just as Mary did at this time over two thousand years ago. Jesus was sent to offer hope and faith to people's hearts and we believe that Jordan was sent for the very same reason. To us, that gave even more meaning and symbolism to her life and gave even more clarity to God's plan for the three of us. The next few days were celebrated very peacefully with immediate family.

The following Thursday, December 27, 2001, we had a doctor's appointment. Again, Jordan's heartbeat was strong. With the advice of our doctor, we decided that if labor didn't begin by the following Wednesday, we would be induced. We didn't want any more complications than we already anticipated by being too overdue. After leaving the doctor's office, we felt so sick to our stomachs. No matter what, we would be giving birth to Jordan in less than a week and the unknown was eating away at our souls. We had never been so scared in our lives. Then, our worst fear came true.

Friday night came and we hadn't felt Jordan move since early that morning. Since decreased fetal movement was typical for Trisomy 18 and she was known to have days where she wasn't active at all, we didn't worry too much. But then Saturday morning came and still nothing. We agreed that if we didn't feel her by Saturday night, which happened to be our due date, we would call the doctor first thing on Sunday morning. Our minds were put at ease when we felt her later that night. Not much activity, but it was something. In the meantime, still no signs of labor. Sunday came and again we didn't feel her move. We woke up on Monday morning, New Year's Eve, and still nothing. After a frantic phone call to our doctor's office, we found ourselves in the waiting room waiting to find out if what we were so afraid of was true.

Our doctor put the doppler in place and we all listened very closely for any signs of Jordan's heartbeat. When the first attempt failed, we knew right away that she was gone. We wept with tremendous emptiness as we were moved to another room to confirm this by ultrasound. Sure enough, as we saw her motionless body on the screen, there was no heartbeat to be found. No activity, no life. Her spirit had surely moved on.

We rescheduled the induction date to the next day, January 1, 2002. This ultimately would serve as Jordan's birthday. We went to the hospital at 9 a.m. and started medication to induce labor. We had decided even before we were pregnant that we wanted just the two of us in the delivery room. Our immediate family and her Godparents waited in the waiting room all day and night. They were praying for us and sharing in each other's pain. A special bond took place between our families that night that will live in all of our hearts forever.

During our labor, the on-duty nurse took us down to the chapel. We prayed and sobbed uncontrollably. We were so angry that it had to end this way. We thought we at least deserved to hold our baby when she was alive and we no longer had that chance. We did however, feel a sense of peace that she did not suffer. She went to God peacefully in a place that was familiar, warm and loving.

At 10:54 p.m., we gave birth to Jordan Arella Coulombe. She weighed 4 pounds, 4.5 ounces and was measured at 16 inches long. Despite all her outward differences, she was so precious and beautiful. She had dark hair just like her Daddy and a little button nose just like her Mommy. And as we sat there and gazed at our daughter's sweet little face, we felt her spirit all around us. We knew she was thanking us for doing everything we could for her, telling us that she loved us and not to be sad, for she was in a wonderful place free from any harm.

Our dedicated priest had made contact with us all that day. We were to call him as soon as Jordan was born. Soon after she was bathed and dressed in a pretty pink outfit and cap that we bought for her, he came into our room. We sat in a very quiet, serene circle with Jordan as he talked with us for some time. He said some prayers over the three of us and then anointed Jordan's body with holy water. When he was finished, our family, who was waiting so patiently came in. They gathered around us and our priest continued to say more prayers. We took some initial pictures with him and Jordan's Godparents. Then everyone had the chance to hold her, have pictures taken with her and say their hello's and good-bye's. Seeing our family and her Godparents hold her so lovingly and cherish every second they had with her touched our hearts so deeply. We will never forget that precious time we all spent together with her.

It was very important to us to gather as many mementos as we could. Although Jordan did not receive an official birth certificate, a Certificate of Life was made for her with her footprints and handprints. We took home hospital blankets, bracelets, hospital outfits & hats, her bassinet ID card, and a precious lock of her beautiful, dark hair. Anything that she had contact with was taken home. We took tons of pictures and video taped the prayer service that was performed with all of our family and her Godparents in the room. We wanted as many memories of her as possible.

That Thursday, the day before her funeral service, the two of us went to see Jordan for the last time at the funeral home. Because of the physical effects of her demise before birth, we decided not to have calling hours. We spent hours with her, just looking at her, talking to her and praying for her. We had a beautiful white satin christening gown specially made for her. She looked so pretty and peaceful, like a little doll. The urge to pick her up and cradle her was overwhelming. We treasured that time we spent with her there, but we didn't want to leave. We knew it would be the end of our time with her, and that was so painful. We finally tore ourselves away and left to get prepared for her service the next day. We left behind some family pictures, letters and some other special things to be buried with her.

Jordan's service was very sacred. There had to have been about 150 people that gathered that day in her memory. We were so touched and grateful for all the people who were there to support us and to honor Jordan. Her tiny white casket was surrounded by beautiful flowers and Christmas decorations. We chose the music & readings that were really special to us and knew that it would be perfect for our little girl's ceremony. Close friends of ours dedicated a dear song to Jordan entitled "I Want to Walk as a Child of the Light" that touched us all. Our priest gave a very personable and unforgettable homily. He described his fond impression of us with Jordan during our pregnancy and on the night she was born. He talked about how it was so important that we held our faith close to us during this time and how her life and every life was valuable and precious. We were so pleased that Jordan received the remembrance and dignity that she deserved. As a special closing to her service, Jordan's casket was brought to the manger scene to share in glorifying baby Jesus. We placed some of her flowers before Him as gifts of faith and love. And on that day, we could really see how Jordan's life had inspired others - the way they talked about her and were interested in her pictures. It was amazing to see how such a little girl that lived only a short amount of time had ignited so many hearts. We were, and always will be, very proud to be her parents.

During the weeks following her funeral, our family and friends did so much for us. Many people had prepared wonderful meals for us and the offers to help with anything that we needed were countless. The support we gained was incredible. People were so caring and thoughtful. We received so many wonderful gifts, flowers and cards in Jordan's memory and honor. Everyone just couldn't do enough to show us that they were there for us. We were very taken care of throughout our time of need.

So here we are just a few months after Jordan's funeral and sometimes we still can't believe what just happened. A year ago at this time we weren't even pregnant with her yet but anxiously waiting to start our family. And now, even though we know we just had a baby, there is no nursery and no baby in sight. What we do have, is a beautiful spirit that we created with God's grace and we know that she will always be watching over us and protecting us. We are still very angry and struggle with our faith often, but we know that God didn't do this to us or our baby. We know that He too is sharing in our pain. And for reasons we will probably never know, we believe that He allowed this tragedy to happen and worked through Jordan to bring family and friends close together and to make a statement of faith and hope. And for that, we feel very blessed that He chose us to carry and nurture her.

Life has a new meaning to us now. Our experience with Jordan has inspired us to rethink our priorities and goals and to reflect on what is truly important in life. And although there has been an enormous amount of strain put on our marriage, we have entered into a much higher level of love, respect and commitment with each other than we ever thought imaginable. We have matured so much together and have learned to be strong for each other. There couldn't possibly be anything in life that we wouldn't be able to get through together.

We look back and not once regret any decisions that we made for Jordan, nor at any point did we consider her life to be a choice. She was a real person who made a real difference. And although we long for her to be with us again, we know that she will always be alive in spirit and fill our home and hearts with her presence. With all the pictures that we took during our pregnancy and at the hospital, we will be making a scrapbook in her memory. We didn't have a baby shower under the circumstances, but we do have many special keepsakes that we bought and were given to us in her honor. Her belongings will be kept securely in a very special memory chest. We also have pictures of her placed throughout our home. If we should be blessed with other children someday, they will be told all about their special sister who is now with Jesus. And when people ask us how many children we have, Jordan will always be acknowledged as our first child. Every year on January 1, we will celebrate her birthday and remember those very special nine months that we had with her. But most of all, we will continuously strive to be better Christians because we know she is waiting for us in Heaven. And that is the only place where we want to be when it is our time to pass - reunited with our baby girl and holding her in our arms once again. ~

Inspired by the Holy Spirit, this story was written by Jordan's loving parents, Alissa and Greg Coulombe of NH in March 2002.

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