Audrey Doyle is grateful for the 29 days she had with her daughter Rosalind – holding her, giving her baths, taking her home.
She has those memories, and more, thanks to the staff at Canuck Place Children’s Hospice, who did everything possible to help Audrey and her family feel as comfortable as possible.
Audrey was born and raised in Maple Ridge. She and husband Mike were expecting their third child, then their 20-week ultrasound showed irregularities with their baby’s heart, brain and even a clenching of the hands that concerned her doctor.
Audrey was referred to B.C. Women’s Hospital, and after a detailed scan, the baby was diagnosed with Trisomy 18.
Audrey works with special needs children in the Surrey school district, but she had never heard of this condition because few babies diagnosed with it survive to school age.
Also known as Edwards Syndrome, it is a condition caused by an error in cell division. When this happens, instead of the normal pair, an extra chromosome 18 results in the developing baby. It disrupts development in ways that can be life-threatening, even before birth.
”A few months ago, it felt like the world was caving in around me after our baby received a diagnosis considered ‘not compatible with life’. After losing my first pregnancy earlier this year, I felt as though this was a cruel and unfair trick,” she wrote on a Facebook post in September.
“I never really felt angry, but did find myself becoming envious of people who have been able to get pregnant easily and continue on to have healthy babies. What a horrible thought to have. Making a human is such a delicate and fickle ordeal, and so many people take it for granted. Through my grief, other people I know shared with me their own struggles and losses, and it has been helpful knowing we are not alone. These last few months have given us the chance to connect with our daughter in such a special way, and build a relationship within our family that she will always be a huge part of. I am so thankful to have such an amazing and supportive husband, who holds me when I cry and also cries with me. The level of support and all the kind words we have received since sharing our news has been overwhelming and we are so grateful. I truly didn’t realize the impact our situation has had on those around us. We still do not know if we will get to take our baby girl home, feed her, or even see her open her eyes.”
A Trisomy 18 error occurs in about one out of every 2,500 pregnancies and one in 6,000 live births. The numbers of total births are much higher because that figure includes significant numbers of stillbirths that occur in the second and third trimesters of pregnancy.
The couple and her doctor discussed the option of not continuing the pregnancy, knowing only half of babies with Trisomy 18 carried to term will be born alive, and only five to 10 per cent survive beyond their first birthday.
In rare circumstances, people live into adulthood, but have developmental issues.
The Doyles chose to give Rosalind whatever time she had.
“It [the condition] is a spectrum. No two people are the same,” said Audrey. “We felt we just needed to give her the best chance we could.”
At Canuck Place Children’s Hospice in Vancouver, they prepared a plan for their baby’s arrival.
Rosalind was born on Oct. 27 at four pounds, 13 ounces at B.C. Women’s Hospital. Two days later, they all moved into Canuck Place, together with sons aged six and nine, and were able to spend a precious month with their daughter – not knowing how much time she would have.
Audrey shared their journey in social media.
On Nov. 12 she said: “I just can’t get enough of her silky soft hair and little elf ears … Today was her due date, and here she is, 16 days old. Rosalind has shown us again and again things don’t always go as planned!”
On Nov. 13 she shared more:
“Every child with a Trisomy 18 diagnosis is affected differently. Many babies don’t make it to term, or pass away within minutes or hours of birth. We are so lucky that we have had so many days with her already!
She has some of the classic markers – clenched hands with overlapping fingers, small jaw, low and differently shaped ears, rocker bottom feet, horseshoe kidneys and the most serious are the issues in her brain and heart.
Her brain is mixing the signals to her body as far as how much oxygen she needs, which results in laboured breathing and sometimes long pauses between breaths. She has had a few long-lasting episodes, and in those moments, she is given medication to help her relax and ease her distress. The colouring in her face changes very suddenly back and forth between a healthy looking pink, to very purply/gray, or ‘dusky’ as the doctors call it.
Her heart has a significant hole between ventricles, as well as a narrowing in her aorta which is affecting the blood flow to the lower half of her body. Things in Rosalind’s heart are starting to change and the pulse in her legs is getting weaker. In an otherwise healthy baby, these heart problems can usually be corrected with surgery. However, with every cell in her body affected with an extra 18th chromosome, her inability to gain weight, and her generally frail condition, the specialists agree she is not strong enough for surgery.
At this time, we are trying to enjoy every moment, every adorable sneeze, cry and even every dirty diaper. We still have no idea how long she will be with us, but we are trying to make sure Roz is comfortable, cozy and cuddled as much as possible.”
Audrey said she wanted to be open with everyone.
“I always felt it was important she be honoured, and that people know about it,” she said. “I felt like it was important to share.”
“We had lots of visitors and lots of people who wanted to meet her, and a lot of support,” Audrey said. “She had already impacted a lot of people.”
Canuck Place offered to keep visitors at bay, saying “we can be the bad guys,” but instead organized a reception that was attended by about 40 people.
Audrey watched her daughter constantly, to make sure she was still breathing.
“I couldn’t relax. I needed to be with her, watching her all the time,” she said.
So that she could sleep, a nurse would take over and hold Rosalind all night.
“She was held for most of her life.”
There were good days, where there were no incidents, and Rosalind was a contented baby.
Nov. 14: Bath time again, and this time she didn’t make a sound! @ Canuck Place Children’s Hospice
Nov. 18: Santa came to Canuck Place early this year, just to meet Roz
That last Facebook entry was one of many examples of the Canuck Place staff going above and beyond, and there is an anecdote behind it.
The staff asked the couple if there was anything they needed. Audrey said she wanted to take Rosalind back to their home in Coquitlam.
“For me, it was important Roz got to come home for a little bit.”
The nurse agreed to accompany them home. They sat down and had a cup of tea, and the nurse asked what else they could do.
“They’re not just nurses, they’re counsellors and therapists,” she said.
With Christmas around the corner, Audrey responded she would love to take her daughter to meet Santa.
So Santa Clause came early to the hospice. The great room was decorated for Christmas, with a ‘Welcome Doyle Family’ sign, and there were presents and stockings for everyone in the family. The staff found out their interests, and the stocking for Mike had a Popular Science magazine, and Audrey’s a quilting periodical.
“They pulled it all together, just for us.”
Audrey feels for families who have to go through what hers did, but without the support of a hospice.
“Our story would be so different if it wasn’t for them,” said Audrey. “I had no idea what Canuck Place does, and now I’m so grateful. They do everything for you, and embrace you.”
Audrey could see Rosalind was not thriving. It was clear she was getting thinner, and if she drank well, it often resulted in more trouble breathing.
“It was hard on her little body to handle that.”
Her heart stopped beating on Nov. 25.
Audrey wrote on Dec. 5: “Yesterday, the sun was shining as we laid our baby girl to rest.
“Roz, we miss you more than words can say, and we will love you and think of you always.”
An aunt has opened a Gofundme page for the couple.
“Unfortunately, when lives are put on hold, financial obligations continue. Audrey is receiving maternity leave benefits at 55 per cent of her income and Mike is currently on unpaid leave.
They would appreciate any donation you can give to help them cover the day to day costs of living as well as for anticipated end-of-life costs for their precious daughter.”
The celebration of life for Rosalind is taking place Saturday. Jan. 12 at Maple Ridge Alliance Church.
• To learn more, visitwww.trisomy18.org.