Dear Friends… please take the time to read this story about Baby Stephanie by Stella’s beloved Auntie Angie. When you are finished, please share it. Post it to your Facebook, print it out (just push adobe button that’s above), and hang it on the bulletin board at work, tweet the link, send messages of support to this family and tell all your friends. Baby Stephanie matters.
A LIFE IS NOT MEASURED BY THE NUMBER OF DAYS IT IS LIVED, BUT THE EFFECT THAT LIFE HAS ON OTHER PEOPLE WHO TOUCH IT.
On the discharge papers from Sick Kids hospital, the document reads ‘Stephanie’s heart condition was deemed unsuitable for surgical intervention, the palliative team was consulted’.
A simple statement for such a profound reality. There is nothing else they can do.
Baby Stephanie was born on May 6th, 2013. While residing in her mommy’s tummy there were no clues as to the monumental anomalies that lay in Stephanie’s heart. Cherry’s ultrasounds all came back normal and her pregnancy was uncomplicated. Stephanie’s Apgar scores were 7 and 9 at 1 and 5 minutes. For those of us who are parents, we know these are good healthy breathing and circulatory numbers for a newly delivered baby. But as quickly as the Apgar tests were conducted, Stephanie abruptly turned blue and needed to be intubated due to respiratory distress.
For 9 months Cherry and Andre, Stephanie’s parents, anticipated and celebrated the life that was in creation. For two years my sister Aimee and her partner Mishi celebrated the created life that was Stella. No real signs or clues that anything but joy and happiness lay in the future. But in the blink of an eye, and a single written statement in hospital discharge documents, their worlds imploded.
Although Stella’s diagnosis came two years into her life, the statement was written as short and simple as Stephanie’s. ‘ Stella’s tumour is in-operable, the family has been referred to palliative care.’
After a host of tests, Stephanie was diagnosed with Tetralogy of Falot, a congenital heart defect involving four anatomical abnormalities of the heart. She was given two months to live. After Stella was diagnosed with DIPG, she was given three months. Stella ended up living for 16 more months, and Stephanie just reached her 8 month birthday. Their fight, strength, and resilience is evident in not only the morbid milestones they surpassed but in their smiles and love for life.
Stephanie’s mother baked a cake for her 8 month birthday, after she was told of our weekly birthday celebrations for Stella:
What do you do with the experiences and learning from a year and a half of helping a child live while they die? Not just any child, but your niece. And not just your sisters’ daughter, but the child of your best friend and closest ally in life, Aimee’s gorgeous, larger than life, little girl. I ask myself this multiple times a day. What do I do with the past few years of my life, of our lives? Do I let it go freely into the past? That feels like such a waste. I have difficulty connecting with the rest of the world these days. I assume my experience as an auntie, and our collective family experience of losing Stella, is a unique one. Some of the things I’ve learned from our journey with Stella are the kinds of little quirky rarities in life that only rare experiences bring. And the 16 months with Stella while she was at home in palliative care, were so full of lessons that some days it feels as if it’s all I know.
Stella and I, June 2012 (one-year after DIPG diagnosis):
So when I learned of a paediatric palliative care home opening in Toronto I immediately connected with them. Emily’s House is where I met baby Stephanie, as a volunteer helping out a few hours a week with the children residing there. I hold baby Stephanie while her mom Cherry can have a brief break to go to the library or the pharmacy for supplies, while Andre works himself into the ground holding down two jobs. I was told Stephanie had heart complications and therefore needed to be on constant oxygen and an NG feeding tube. I was not told how long Stephanie may live for, but it was implied that it would not be for very long. Each week I look forward to cuddling with her, reading to her, soothing her while she cries. I came into the situation knowing that Stephanie would likely have a short life, and make an effort to be present with her in the moment, fighting the places that our minds so often naturally wander to, in the future.
A few months into Stephanie’s stay at Emily’s House she stabilized, dipped and stabilized again. Her parents began bringing her home each weekend overnight where a community care nurse sleeps over in case Stephanie needs medical attention in the night. It was natural for people to start questioning whether she could live until a time she may be strong enough to have heart surgery or even a heart transplant, despite medical opinion. And while Cherry and Andre tentatively accept the fate of their precious daughter’s sick heart, they hope and pray for a miracle.
Photos taken by the brilliant Christopher Yapp who generously offered his time and expertise!
Andre, Cherry and Stephanie:
Cherry and Andre are both 35 years old, the same age as me. Cherry from the Philippines and Andre from Brazil, they both arrived in Canada in 2007 for work, met at a Tim Hortons and promptly fell in love. Neither one has any family members in Canada. So when the diagnosis arrived and Cherry and Andre learned that Stephanie would require constant medical care, it hit particularly hard.
I started going to their house each weekend, during their short coveted time at home, to take care of baby Stephanie for a few hours so that Cherry and Andre could get laundry done, take a much needed nap, shower, or go shopping. Being in their home with the beeping of medical machines, scattered supplies of medication, and home nurse visits, is all too familiar. The sounds, smells, and sights are similar to those that surrounded us throughout our time with Stella after her diagnosis.
Stella and Stephanie are two girls who defy medical odds, living beyond doctors’ predictions. Stella’s palliative doctor clearly stated that a likely reason for her staying with us as long as she did is because of the love that enveloped her. Love, care, and comfort carried Stella through scientific reasoning. And as I watch Cherry and Andre’s deep love, selflessness, and attentiveness for their baby daughter, there’s no doubt this plays a role in Stephanie still being here.
But with their abundance of love for Stephanie, comes an abundance of heartache. I recognise the utter sadness in Cherry’s eyes and exhaustion in Andre’s. I connect with it. Even though I wasn’t Stella’s parent, I looked into my sisters eyes each and every day, baring witness to the excruciating pain. And I know what the weight of pure helplessness feels like. Stephanie’s family is a special one. The love exhibited by them in everything they do for her is so familiar. As is the uprooting of their world as they know it, never to go back again. The fear is familiar too, the ever present fear that seeps through most of the moments in which they hold their beautiful daughter. But despite such sorrow, I can sometimes hear faint laughter between the two of them seeping through the walls of their apartment, which makes me smile. With Stella, humour and laughter would sometimes get us through the toughest of days. People outside of our intimate circle would often have trouble understanding how they could enter the home of a dying three year old child, and find all the adults in the home buckled over laughing so hard we could barely speak, tears streaming down our faces, and our bladders giving way. Doing ridiculous things such as donning an adult diaper and prancing around the living room just to get a laugh was commonplace. Sometimes the humour was morbid and other times light and silly. Often the laughter was so intense that we all thought we were literally going crazy. I’m not exactly sure what the psychology behind it is, but my guess is that there must be a certain point that our minds and bodies cannot sustain the incessant high levels of stress hormones and emotional pain any longer. The endorphins released from laughing can be a vital break for the soul, and I am happy that Cherry and Andre have found that. Although Cherry says it took over 6 months for her to find her ability to laugh again, before that, it was only tears of pain.
I sit and wonder how we could have gone through Stella’s sickness and death without our family, who were such an integral piece of the journey. I just can’t imagine it. Aim and Mishi had layers upon layers from immediate family to distant relatives come together to hold them up. Cooking food, raising money, making handmade dolls, sending messages of love and support; the ways in which family came together and wrapped themselves around Aim, Mishi and Stella, were endless. Not only family, but a whole community came together to embrace them. High-school friends, neighbours, anonymous donors, blog readers in foreign countries; a mass of people enveloped my family. The opposing realities of the devastation of having a terminally ill child, and the selfless acts of compassion and caring from people en mass, show how bitter sweet this world can be. The support network that developed, and continues to this day, is a true testament to the beauty in life. It is a sharp contrast to Cherry, Andre, and baby Stephanie’s world, which is empty of family here. No extra hands to hold baby Stephanie when emotions and sadness take over their bodies. No familial shoulders to cry on. There are some friends, friends who come over to cook dinner over Christmas time, friends they hold dear. But living in Toronto for only a handful of years, it has been hard to create an organized network. There is also Emily’s House, which is a godsend for them. Emily’s House provides much more than 24 hour medical care in a home environment. They are committed to optimizing the quality of life for children with a terminal illness and their families, and they provide social workers, faith based support, volunteers to drive them to medical appointments, and a staff team who have fallen in love with Stephanie.
Stephanie is a baby who is not hard to fall for. With a head full of thick dark hair, big brown bold eyes, and a smile that will break your heart, Stephanie captures the attention of anyone who lays eyes on her. Although she is 8 months old, she is the size of a 3 month old. It has been difficult for her to gain weight, although according to her last cardiologist appointment she has miraculously gained a little. Despite being developmentally behind her age, Stephanie fully engages with anyone who holds her. She listens intently, loves music, enjoys being read to, and enthusiastically responds to the excitable voice of Amanda, Emily’s House Volunteer Manager. She is a sucker for the shaking of a rattle which easily sooths her. She is a happy baby, and despite having some pain that is eased with medication, she seems content. Stephanie is also very smart. She quickly learned that rubbing her head back and forth against any surface she’s on, could dislodge the tubes that are taped across her cheeks and into her nostrils. One can easily see how irritating the tubes would be, and she is adept at trying to grab at them and pull them out. This is one reason why Stephanie needs constant watch. If she is not wrapped up in a swaddle, her arms are free to pull out the tubes, and therefore someone always needs be in arms reach to redirect her little clawing hands.
I appealed to Cherry to allow me to write this post about Stephanie. Both Cherry and Andre are soft spoken, understated, humble, and extremely appreciative people. They don’t ask for much. Cherry points out that if they were back home in the Philippines, Stephanie would not have access to the medical care, medications, and supports that Canada has provided. They would have to pay out of pocket for the care Stephanie requires and they would not be able to afford it. For this, they are truly grateful.
I am writing this post about baby Stephanie for a few reasons. One is to simply share her with you. I want people to know about a beautiful brilliant baby girl who is fighting each day to be here. It’s also my hope that this compassionate loving community that embraced Aimee, Mishi, Stella and our whole family will also welcome Stephanie, Cherry, and Andre with open arms. Cherry speaks about how isolating and alone it can be. And I believe messages of love, recognition, and encouragement will keep them going the same way they have kept Aim and Mishi going. Maybe Cherry and Andre will connect with other parents who have a terminally ill child. As Mishi has mentioned before, it’s a small club, and it has proven hard to access for a family relatively new to the country.
I am also hoping that this amazing community will consider giving to Stephanie’s family financially. Cherry’s maternity leave ends in March and she is supposed to return to work. Because she has been on maternity leave she can’t receive any other EI benefits, and they can’t afford for her not to have an income. She is facing the daunting reality that she will likely have to go back to work in a month and a half, taking her away from the precious time left with Stephanie, just to stay afloat. She will have to start working weekends in march, taking her away from home time with Stephanie. I can’t imagine facing this dilemma. Aimee and Mishi were privileged enough to receive benefits from their full-time employers, which included ‘sick leave’ benefits, as well as generous donations from both friends and strangers that allowed them to stay home with Stella each and every day until she took her last breath. What an amazing privilege that is, and I know they will be forever grateful. I also know every single dollar generously donated to Stephanie’s family would be an incredible gift, possibly allowing for more time spent with their baby daughter. When I pitched the idea to them of creating an account on-line for people to donate to, in order to help support them in spending quality time together with Stephanie, as well as covering costs for things on weekends when they are at home, such as pharmacy supplies, printing photographs, food, and clothing, they wondered who would do this. I told them about the incredibly generous people far and wide that came together for my family. I told them there are people out there that are willing to give if they’re able to.
And so I ask for people reading this to send it to everyone you know, post it on Facebook, and tell your family and friends. Tell them about the inspiring baby girl named Stephanie who, despite her broken heart, creates love all around her.
To donate to baby Stephanie, Cherry, and Andre please click on the ‘donate’ link. Funds donated will go toward the family spending quality time together at home on the weekends, outside of Emily’s House, covering costs of supplies and food. It is also my goal to raise enough funds to grant Cherry an extra 3-6 months with Stephanie before having to go back to work. Please make note that this is not a registered charity and therefore a tax receipt cannot be granted.
To contact Cherry and Andre, send messages of love and support, or send an email transfer, you can connect with them at:
To learn more about Emily’s House and baby Stephanie in the news check out the links below: