I Never Knew What It Was Like – Until I Did

I never knew the grief a woman experienced after their child was stillborn – until I did.

Until we experience it for ourselves, we cannot ever fully understand the kind of grief we go through when, in that moment of birth, death arrives, and you are left holding a dead baby.

It was surreal to feel my baby’s warm body quickly losing all heat, and then his body became ice cold. Looking at his tiny body, I counted his fingers and toes, and as I held him closely, I felt my dreams for the future fade away with my son’s passing.  In that moment, a wave of disbelief came over me, and this was quickly followed by a numbness that left me unable to cry or speak.

When the doctor handed me my baby, I was startled by how dark his skin appeared, which confused me, given that both my husband and I are white. I tried to make sense of it, but could not until I heard my doctor say, “I forgot to tell her about unoxygenated blood,” and explain about a blue baby. I found out that a ‘blue baby’ refers to an infant whose blood is not properly oxygenated, often due to congenital heart or lung issues, causing their skin to appear bluish rather than its natural color. My son’s lungs were not functioning to oxygenate the blood, so although it was a black baby that I held, I found out that the correct term was blue baby.

I still remember feeling like I had stepped into an alternate universe; my only child was dead — this could not be happening for real, even though I expected it.

A few days before Christmas 2000, I was told that my baby would not survive; he had Trisomy 18 and was informed that Trisomy 18, known as Edwards Syndrome, was not compatible with life. Further, I was told that if my baby did survive the birthing process, he would have no quality of life whatsoever.  I felt numb and overwhelmed, unable to process what the doctor was saying as he explained this to me.

For ten years, I had tried to become pregnant, and when I turned 39, I thought I was going through early menopause when I missed my menstrual cycle for a couple of months.  I had bought so many pregnancy tests over the years that I should have bought the company; that is how much money I spent on those, as well as fertility medications and treatments.

The absolute incredulity of finding out I was pregnant was phenomenal. I was in shock and so extremely happy.

However, even in the early stages of my pregnancy, a niggling fear was present and stayed with me throughout it. 

Both my husband and I said we didn’t want genetic testing done on the baby because of my advanced age and high-risk pregnancy.  We only knew about Down Syndrome being a possibility, and we were okay with having a Down Syndrome Child – it would not matter to us if the baby had been born with Trisomy 21, the official name of the genetic abnormality that causes Down Syndrome. So, we let the pregnancy continue, not knowing about other genetic abnormalities.

God had blessed me with a miracle – a pregnancy at the age of 39.  Nightly, I prayed that the baby would be a boy because I was so afraid of having a little girl.  Too many bad things happen to little girls, so I prayed every night that my baby would be a little boy. The fear stemmed from events in my life from a tender age.

In mid-October, I was sent for a second ultrasound as I was nearing my fifth month of pregnancy.  A week later, I found out that I would have to go for a 2^nd level ultrasound in Winnipeg because the ultrasound at the hospital revealed an abnormality in the diaphragmatic area of my son’s body. The positive note from the ultrasound was that we found out we were having a boy. I gave thanks for my prayers being answered.

The last week of November or the first week of December 2000, we went to Winnipeg to the Women’s Hospital to have the 2^nd level ultrasound and to have an amniocentesis to check for genetic abnormalities with the baby.  We would not know the results until December 21^st.

It was snowing outside on December 21^st; I was cooking supper, and my husband was finishing the nursery when my doctor knocked on the door.  He had the results of the 2nd-level ultrasound and amniocentesis in hand.

The news was not good.  He informed us that the baby had a third 18^th chromosome. The doctor explained that it happened when the splitting occurred shortly after conception, two chromosomes were supposed to go to the baby and two to the placenta.  My son received three 18^th chromosomes, and the placenta received one. I understood math and splitting, etc., but I didn’t know what genetic abnormality meant until the doctor said it was incompatible with life.

Further, he stated there were only two genetic abnormalities deemed to be incompatible with life, and that was Trisomy 13 – le cri du chat, and Trisomy 18 – Edwards Syndrome.

The way my husband looked at me when he found out was withering. I tried to hide my very pregnant belly under the kitchen table and slouched low in my chair as if to hide the fact that I was very pregnant.

The doctor went on to say that it was very rare for a woman to carry a Trisomy 18 baby to full term and that most miscarried in their first trimester.  I was told full-term births were rare and that only 1 in 20,000 Trisomy 18 full-term births happened. The doctor left shortly after informing us of the results and saying how sorry he was to deliver such bad news just before Christmas.

My husband didn’t say a word; he just closed the nursery door and sat down for supper.

This is difficult to write about, as I never really discussed it with anyone and just glossed over events leading up to my son’s stillbirth in previous writings. Remembering that night and the days leading up to his being born dead are a blur.

I set about doing research on Trisomy 18 and learning about it, and writing hospitals and doctors in neonatal units, begging them to do surgery to repair my son’s diaphragmatic hernia to give him a better chance of survival at birth. At the time, successful in-utero surgeries were being done on babies still in the womb.  I remember the doctor who did my 2^nd level ultrasound and amniocentesis telling me that if it were a genetic abnormality, no neonatal surgeon would step in to save the baby, especially if it was found to be either Trisomy 13 or Trisomy 18.  I still didn’t understand genetic abnormalities and what they ultimately meant.

Then I begged my doctor to have the baby by cesarean section so that natural labor would not further compress my son’s lungs, as his stomach had moved up into the chest cavity and was compressing his lungs. I was refused and was told I would have to have a natural childbirth.

The condolence flowers began to arrive on the 23^rd of December. I couldn’t believe that condolence flowers were already being sent when the baby was not yet born.  I cried every time a new delivery of condolence flowers was received.

I hated receiving those flowers, especially because my son was not born yet, nor had he died. I know that the people who sent the flowers only meant well, but for me, the days leading up to Christmas, while receiving these flowers, felt like they were hurrying my son’s death along.  I know it was irrational to feel that way, but I was steeped in grief, knowing there was little I could do to save my son’s life.

My husband had told people he worked with about it, and the flowers were coming from them.

The days between Christmas and New Year’s were a blur. I remember trying to hide my very pregnant belly so my husband wouldn’t see it. I felt like such a failure as a mother and as a wife.

I contacted Father Mike to ask him to baptize the baby as soon as my son was born and informed him that I would call him when I went into labor.

I requested this a couple of times from Father Mike, and he must have obtained a special dispensation to baptize the baby in utero. We had the baby baptized on January 1^st, 2001, at 5:00 p.m. in the church with our dentist, who was also the deacon of the church.  He attended the baptism that Father Mike officiated. Father Mike told me that the Church recognized the wishes of the baby to be baptized. They recognized it as a call from his soul to be baptized before birth and the Catholic Church believed (as I do) that life commenced at conception, not at birth.

That was another surreal experience. Having holy water spilled on my big pregnant belly to baptize the baby on New Year’s Day.  Dennis and Nancy were present for the baptism and were named Godparents. We all went out for Chinese Food after the baptism, then went home.

My labor started for real on January 2^nd, around 2:00 p.m., and I was admitted to the hospital then.  My water broke around 8:00 p.m., and I remember being so scared that this was it, there was no turning back now, that this was happening whether I liked it or not. In my heart of hearts, I knew that my miracle was about to be taken away from me.

I had been talking with my friend Nancy and her husband Dennis and their two little ones, Dylan and Jeremy, when my water broke. Dennis quickly left with the kids, but Nancy stayed with me as she was an RN.

I remember thinking when my water broke: “Did I just pee myself or is that my water breaking?” And feeling ashamed of wetting myself in front of people, even though it was my water breaking. But I knew there was no turning back now that this was happening, whether I wanted it to or not.  That afternoon, I had had an ultrasound because the baby was breech.  The ultrasound showed that my son was still very active in the womb and a comment was made that he had a whole swimming pool to himself.  His little legs were going; he was kicking like a little wild thing.

The labor continued smoothly, and no one offered me an epidural, and I didn’t think to ask for one either. We carried on a normal conversation and stopped momentarily when contractions started and stopped. 

At one point during a particularly bad contraction, my husband joked and said that it was okay, we could try for another baby tomorrow. I was so upset that I kicked him in the balls for that one.

Eventually, it came time to push, and I was pushing so hard and was flat on my back that I couldn’t breathe. I remember trying to suck air in, but I couldn’t get any until the doctor yelled at my husband to lift my head so I could breathe.  I was gripping my husband’s hand so tightly that he later told me it felt like I was going to break it.

Nancy told me that in all her years as a Registered Nurse, she had never seen such controlled labor and birth.  She marvelled that I never yelled or screamed, just pushed through it and carried on a normal conversation between contractions.  I moaned when I felt my pelvis widening to make room for the baby – it felt like my pelvis was breaking apart and rearranging itself.

My son, Garrett, was born at 2:06 a.m. on January 3^rd, 2001. I was able to hold my son for a while after he was born, and went through quite a period of confusion when the doctor handed me a little black baby who was still so warm but whose body quickly cooled. Sister Rose was waiting just outside the room for when the baby was born, and came in right away and finished the baptism by baptizing my son with Holy Water, now that he was born, and then we all prayed for a short while. Our doctor also prayed.  I am Catholic, and the doctor was Jewish, but he prayed along with us during our son’s baptism.

When I opened the blanket to look at my son, I noticed that Garrett had deformities; he had a harelip, and his hands were bent back much like simian hands.  He had all his fingers and toes and a beautiful head full of black hair. One small patch of white on the back of his neck, while the rest of his body was blue. He was born with a diaphragmatic hernia and lower left ventricular defects in his heart. The doctor reiterated that there would be no quality of life had Garrett survived as a Trisomy 18 baby and then told the nurse that I could be discharged and left.

I was subsequently discharged and went home at 4:30 a.m. with my husband, who went to bed. Walking into the nursery after my husband went to bed, the oppressive silence of the room and the house troubled me greatly. I felt so alone and so devastated. I had no one to talk to.

Calls were made to the family by me around 6:00 a.m., and I did things around the house and tried to rest before the appointment at the funeral home at 10:00 a.m. to arrange for my son’s cremation.

Everything was so otherworldly.

I had left the hospital without any instructions for the post-birth processes and care of certain tender areas that had required stitching.

We went to the funeral home and planned for my son’s cremation.  Then my husband took me out for lunch, after which we plowed an ice road for an hour or so, then went home, where my husband was true to his word about trying for another baby.

The hardest part after my son’s death was the loss of all the hopes and dreams I had for him and our future together as a family.  All the firsts we would have celebrated and all of his achievements. That could no longer happen as God had called him home before he had lived in this world.

For years afterwards, out of the blue, I would feel a tug on the back of my shirt, much as a toddler would do to get his mama’s attention, and I would turn around, and no one would be there, nor was my shirt snagged on anything.  I believe it was Garrett’s way of saying hi, mama, I’m ok, I’m here checking in on you.

He would have turned 25 years old this year. 

Grief never dies; it just lessens with time.  It is something that stays with you for life, particularly when it is your child who dies.

I never knew what it felt like until I did.