'Why I chose to meet my baby - knowing she would only live for hours' : Evewoman - The Standard
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Parenting

Parents determined to see child they were told would not live for very long

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Stefanie and Adam holding baby Stephanie (Image: Amber Bourret Photography)
  • Baby Samantha was born with Patau's syndrome, a serious genetic disorder which causes facial features defects
  • Stefanie and Adam had braced themselves for mere minutes with their daughter

For so many excited parents-to-be, the birth of their child marks the first day of a hugely different - and very special - type of family life.

Nothing is ever the same, and it's the journey into the unknown, with all its happy chaos, that make this day so memorable.

Yet for Stefanie Wahl, the day her youngest daughter, Samantha Rose, was delivered earlier this year was a day tinged with as much shattering sadness as joy.

"Of course," the mum of two tells MirrorOnline, "we knew that the day we would meet her would also be the day we would likely say goodbye."

Baby Samantha was born with Patau's syndrome, a serious genetic disorder which causes facial features defects, abnormalities such as extra fingers and toes, and may result in the intestines being outside of the body.

Nine out of 10 children born with Patau's syndrome die during the first year.

Having been told by doctors to not expect Samantha to have the capacity to take her first breath, as she walked through the hospital doors, Stefanie had to cope with the knowledge that the time left with her daughter was scarce.

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Stefanie, 27, and her husband, Adam, had found out about their daughter's condition at the 20 week anatomy scan.

It was later confirmed with a level two ultrasound and amnio a few days after.

Prior to the devastating news, Stefanie's pregnancy had been progressing normally, and she had only had the very vaguest idea of what Patau's (or Trisomy 13) was.

Yet despite the distressing prognosis and subsequent offer of a termination, there was no doubt in Stefanie and Adam's minds.

They would see the pregnancy through to the end.

"When we found out it was likely trisomy 13," Stefanie, from Canada, recalls, "I was floored.

"That was worse than worst case scenario for me, I had never even thought it could be something chromosomal, the odds are so low for a healthy young female.

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"When we found out it was a little girl, though, that’s when it became real, and I broke down crying. I didn't have much of a reaction until then, but finding out her gender made it real, and gutted me."

Originally, Stefanie and Adam had wanted the gender to be a surprise, but the discovery of how fragile their daughter was changed everything.

"I decided we would find out, so that we knew as much as possible about her for as long as possible," Stefanie continues.

But there were adamant they would meet their daughter

"I also decided we would name her if our fears were confirmed, and we did, on our way home from that second ultrasound."

The couple, also parents to two-year-old Leontine, were told that while many of these babies have a better outlook in recent times due to heart repairs and better care available, their daughter would not be one of them.

"She would not be a candidate for heart surgery," Stefanie explains.

"She had half a heart, essentially, and once she was born the way her circulatory system had formed, she would not perfuse blood to her organs long after birth."

Describing the extent of Samantha's health issues, Stefanie says:

"She had alobar holoprosencephaly (when the forebrain fails to develop into two hemispheres), the worst form, and was missing most of her cerebrum.

"She had an omphalocele, which means she had a sac of organs outside of her body. A wide cleft, and missing nose.

"She had extra toes, and her eyes looked to be missing or not formed correctly. She would either very likely be stillborn, or at most live a few days after birth."

Both the couple's perinatologist and geneticist offered them a termination.

As for their decision, Stefanie says, "Simply, we were not going to be the cause of our daughter's death. Her death would already be a source of suffering, we would not add to her suffering by means of abortion.

"People say they abort to spare their baby future suffering; that is simply not factual, if I can be blunt for a minute. Abortions cause pain, period.

"Being held and kissed and loved by your family as you die is a much more kind and comfortable way to go.

"I was happy to hang onto my little girl for as long as she was happy to be with us. It's the least I could do, as her mother.

"We had monthly ultrasounds to check on her growth and wellbeing, and every time we saw how well she was doing, it confirmed that she wanted to be here.”

Her pregnancy continued as Samantha lived and developed "along her own little growth curve", but at the 36 week mark, Stefanie was diagnosed with pre-eclampsia, and booked in for an induction.

"That appointment was heart wrenching," she continues.

"We were not ready for my pregnancy to come to an end and thought we had at least another month until we would meet her."

In spite of the turmoil she was in, and the urge she felt to run the other way, Stefanie was also desperate to meet her baby.

After a five hour labour, Samantha was safely delivered. It was a moment which Stefanie describes as being "seared" in her memory.

"The moment I first saw her, I'm not sure if the room actually became quiet, or if I blocked out the sounds, but I just remember a hush.

"A small moment of disappointment; against all reason you do hold out hope that the amnio was wrong, the repeat ultrasounds were all wrong.

"But in that moment that hope disappears and your baby's diagnosis becomes concrete reality."

Stefanie and Adam had braced themselves for mere minutes with their daughter. In the end, they had three whole days with her.

Of this special time, Stefanie says:

"They were the most stressful days of our lives. Imagine being handed a premature baby of low birth weight without the ability to nurse, and being expected to look after her yourself, with only very limited help.

"Of course this is what we wanted; we didn’t want her to spend any time in the NICU away from us, but it was still a monster task.

"The three most stressful and difficult days of our lives, but the sweetest as well. I would do those three days over again a hundred times.

"We so cherished our time with her, I would give a limb to go back and hold her for just a few more minutes, smell her, kiss her soft cheeks one more time.

"We had amazing support from our families, my midwife, and the staff at the hospital."

It may have only been three days, but the impact of that time has been significant.

"Every life is significant, no matter how difficult or short," she says. "She was very much our daughter, and though we didn't get to keep her very long, she’s left a hole in our family.

"Meeting her took away all the anxiety and grief I felt being pregnant. She was so lovely, and I have so much joy over meeting her.

"She didn't have time to accomplish much in her three days. But she just kept holding on for us.

"She very obviously wanted to stick around. Who would we be to have denied her life and not given her that chance to meet and be loved by her family?"

There is also a more physical legacy. Stefanie still has phantom kicks, and has donated her breastmilk to a friend whose baby girl was born the day before Samantha.

"I'm not sure how to finish this but just to say that our daughter was amazing, and meeting her was worth every heartache. I would happily do it again just to meet her.

"I miss her every day. I know I will see her again, waiting until then is hard.

"But in the meantime we take every opportunity to talk about her to keep her memory fresh."

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