I Never Knew What It Was Like – Until I Did

I never knew the grief a woman experienced when 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.

The surreal feeling of feeling your baby’s warm body quickly loses all heat and becomes ice cold. Looking at his tiny body and counting fingers and toes and watching your dreams for the future with your little one die with him.

Trying to make sense of why the doctor handed me a black baby when both my husband and I were white until I heard my doctor say: “I forgot to tell her about unoxygenated blood” and explain about a blue baby – meaning a baby born dead.  The lungs were not functioning to oxygenate the blood, so although it was a black baby that I held, the correct term was blue baby.

I still remember the feeling of feeling like I had stepped into an alternate universe because 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 told at that time that Trisomy 18 or Edwards Syndrome was not compatible with life. That my baby, if he did survive the birthing process, would have no quality of life whatsoever.  It was like the doctor was speaking an alien language to me when he explained this.

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, 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.

A niggling fear was present though and stayed with me throughout my pregnancy.  Both my husband and I said we didn’t want genetic testing on the baby because of my advanced age carrying a child.  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 was a Trisomy 21 baby – 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 though, 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.

Mid-October I was sent for a 2^nd ultrasound when 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 because the ultrasound at the hospital showed an abnormality in the diaphragmatic area of my son’s body. We found out we were having a boy. I gave thanks for my prayers being answered.

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

The news was not good.  He informed us that the baby had a 3^rd 18^th chromosome. That when the splitting occurred shortly after conception, 2 chromosomes were supposed to go to the baby and two to the placenta.  My son got 3 18^th chromosomes. 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 hid 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 the rarity was 1 in 20,000 full term births for Trisomy 18.  He left shortly after, 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.

It was a very difficult night. The sense of unreality was extreme. It felt like I had taken some mind-altering drugs and was living in someone else’s body living their life, not mine.

I set about doing research on Trisomy 18 and learning about it and writing hospitals and doctors in neo-natal 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, there were successful in-utero surgery 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 was 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 it ultimately meant.

Then I begged my doctor to have the baby by cesarian 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 natural childbirth.

The condolence flowers started 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.  Every time the delivery from the flower shop arrived, the lady was crying as she gave me the flowers.

I hated receiving those flowers especially because my son was not born yet, nor had he died.

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

I contacted Father Mike to ask him to baptize the baby as soon as he was born and 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 dispensation to baptize the baby in-Utero because we had the baby baptized on January 1^st at 5 pm in the church with our dentist who was also the deacon.  He attended the baptism with Father Mike officiating. 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 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.

I went into false labor that week and ended up in the hospital on New Year’s Eve alone. The labor stopped and I was sent home.

My labor started for real on January 2^nd around 2 pm and I went into the hospital then.  My water broke around 8 pm and I remember being so scared that this was it, there was no turning back, that this was happening now. 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.” 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 breach but was very active and 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 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 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 I couldn’t breathe. I remember trying to suck air in but couldn’t get any until the doctor yelled at my husband to lift my head so I could get some air.  I was gripping my husband’s hand so tight he later told me it felt like I was going to break it.

Nancy told me she had never seen such controlled labor and birth.  I never yelled or screamed, just pushed through it. I moaned though 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 am 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 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 he baby with Holy Water now that he was born and then we all prayed for a short while. Our doctor prayed also.  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 in the say of simian hands.  He had all his toes, a beautiful head full of black hair. One small patch of white on the back of his neck when the doctor was telling me about babies being born with unoxygenated blood. 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 for Garrett as a Trisomy 18 baby and then told the nurse I could be discharged and left.

I went home at 4:30 am with my husband who went to bed.

Made the calls to the family around 6 am and did things around the house and tried to rest before the appointment at the funeral home at 10 am to arrange for my son’s cremation.

Everything was so otherworldly.

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

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

The hardest 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 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 and my shirt was not snagged on anything.  It was his way of saying hi mama, I’m ok, I’m here checking in on you.

He would have turned 24 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 that dies.

I never knew what it felt like for women who had a stillborn child – until I did.