The greatest love, the biggest loss

One of the most tragic things a parent – or anyone – can experience, the loss of a baby changes a family

 

Editor’s note: Please note there is a trigger warning for this story, as it is about infant loss. Losing a child is arguably the most heartbreaking thing to have happen – children are not supposed to predecease their parents. Even in the recent past, stillbirth and infant death were not spoken about, but today, more people are coming forward to share their stories and experiences, both for their own families’ healing processes, and to help others. We thank Julie Barbosa, Courtney Leitch, Rachel Samulack and Rebekah Shirey for courageously sharing their words with Parenting Times.

 

“A beautiful little angel”

In 2017, Courtney Leitch got a Christmas gift she wasn’t expecting – she found out she was pregnant. Although a complete surprise, she had always wanted to be a mother, and was extremely happy.

Because she previously had a sleeve gastrectomy, Leitch was considered to be high risk. At 19 weeks, Leitch learned she was having a baby girl, but that her cervix was opening and that she required surgery to have a cerclage put in to keep the baby in as long as possible. “I was put on bedrest and did the best I could to try to limit my stress, but I was worried about whether or not I would get to meet my beautiful baby girl,” Leitch says.

When she went into labour at 22 weeks, doctors told Leitch the baby would be too small to survive. Emersyn June was born on April 28, 2018 and died just over an hour and a half later in her mother’s arms.

“Emme was a beautiful little angel,” remembers the 36-year-old public servant. “It was excruciating holding her, waiting for her to die, knowing all my dreams for her would not come true. Now I Lay Me Down To Sleep came to take pictures for me. They are the most precious items I could have.

“I don’t think I really left my house for weeks after she died. I didn’t know how to process what had happened. I lost my daughter and my relationship with her father crumbled.”

Leitch suffered from postpartum PTSD stemming from the trauma of Emme’s birth and untimely death. “It was a struggle to do anything. There is one thing that forced me to get out of bed in the morning – I found out I was pregnant again on July 2, 2018. No matter how horrible I felt, I had to look after this new little angel. The pregnancy was terrifying. It was high risk, (I) had surgery at 12 weeks to put in a cerclage, doctor’s appointments bi-weekly, couldn’t work, not that I was mentally prepared to do so.”

Despite seeing a therapist, Leitch still has nightmares, flashbacks and anxiety attacks.

“My second daughter, Isobel Rae, has helped me continue living,” she says. Of Isobel, who turns one on February 17, she says: “I live for her. I want her to know about her older sister. I talk to her about Emme all the time, I have pictures around the house, we visit her grave. I find others are hesitant to talk about Emme, but I’m not. She’s just as much my child as Isobel, why wouldn’t I talk about her?… I can’t pretend that Emme wasn’t here or a part of my life. No matter how painful the experience was and still is, I can’t and won’t pretend it didn’t happen. It’s changed me. She’s always on my mind. My heart hurts that she is not here, but if she was, I wouldn’t have my Isobel. It hurts that I can’t have them both. I struggle daily, but I’m working on it everyday. Maybe one day it will hurt a little less, probably not.”

 

“Mountain of strength”

 

“My son Aaron, whose name means ‘mountain of strength,’ spent 100 precious minutes with our family after his birth in June 2016,” says Rachel Samulack. “These fleeting moments were sad and but beautiful.  Aaron was a much loved and wanted baby.”

At a routine ultrasound at 19 weeks, Aaron was diagnosed with bilateral renal agenesis – meaning he had no kidneys. “This heartbreaking diagnosis left us shocked,” says Samulack, a 34-year-old public servant. “We heard Aaron’s strong heartbeat and saw his beautiful profile on the screen at a follow up ultrasound.  He was holding his right hand in front of his face like he was waving at us. Afterwards in a meeting room, the doctor told us that Aaron’s lungs would not develop enough for him to survive after birth, as there was no amniotic fluid because of this condition. He was otherwise perfect and was growing right on track.  She recommended that we terminate the pregnancy. After hearing Aaron’s heartbeat and feeling him move constantly, we decided to continue with the pregnancy as it was the best decision for our family.” 

Aaron became a patient of the Perinatal Hospice program, which provides support to families whose babies are likely to die before, during or shortly after birth, at Roger Neilson House. “We had access to specialized care including counselling and emotional support, assistance with medical decisions about our pregnancy, delivery and Aaron’s care after birth, memory making and ongoing bereavement care,” Samulack says. Roger Neilson House also offers a specialized support group for parents who have experienced the loss of a pregnancy after 20 weeks or the death of an infant. 

 

Aaron was an active baby who loved spicy food and music. He would move constantly when Rob – Samulack’s husband – played the piano. Born after a fast labour at 36 weeks on Father’s Day, June 19, 2016, Aaron did not cry when he was born but he was breathing, Samulack remembers. 

 

“He was a beautiful little boy weighing four pounds, eight ounces.  He had strawberry blond hair and full lips like (his older brother) Gabriel.  He met Gabriel, his Nana and Papa in person and his Grandpa, Grandma and aunts and uncles via webcam. He did not appear to be in any distress, except when a camera flashed. I do not believe that he experienced any pain. Aaron spent his brief but precious time with us surrounded by love.

“In the days following Aaron’s death, Rob and I appreciated friends reaching out to us and marking days like Aaron’s diagnosis date or birthday with a card or an email. People can find it hard to talk about pregnancy loss or the death of a baby. Not all parents grieve the same way, but I wanted to share my experience with others.” 

The October after Aaron’s death, the Samulacks learned about The Butterfly Run Quinte, and founded the Ottawa run in 2017 (Aaron’s Butterfly Run) and were the chairs on the original run committee. The Butterfly Run Ottawa, which supports Ottawa and area families and raise awareness of infertility, a loss during pregnancy, pregnancy after loss, or the loss of an infant.

“Aaron taught me that we can love deeply without regret,” says Samulack. “He taught me that life can be hard, but that a mother’s love for her child transcends life on Earth. Life is so fragile and precious. Aaron was held and loved as he left this Earth, which is all that any of us can ask for in our final moments.” 

Gabriel, now five, asks about his little brother often and he tells Matthias, age one – the Samulacks’ second rainbow baby, born October 2018 – about him when they look at photos of Aaron. “Aaron’s footprints were small but mighty.” 

 

“I was ecstatic”

 

Julie Barbosa and her husband David were “ecstatic.”

Barbosa had just had her second round of IVF in Toronto and it was successful, and the Orleans residents were looking forward to having a sibling for 17-month-old Jillian.

“My pregnancy was normal,” says Barbosa, then 37. “Other than suffering major headaches, I did not have many symptoms. There were no issues other than ensuring that I take my estrogen and both types of progesterone for the first trimester. I was not considered high risk.”

She was about eight weeks pregnant in September 2017, when she found out the baby was gone during a routine ultrasound. “I knew something was wrong when the very young ultrasound technician said nothing at all, or tried to say nothing.

“I was in shock, numb and I was alone,” says Barbosa. “David was in charge of dropping Jillian off at daycare before heading into work. My next call was to my mom and then to work in order to let them know that I wouldn’t be coming that day, that weekend. I tried contacting both my family doctor and the IVF clinic for the next step. I felt so lost as I hadn’t had any signs of miscarriage. No cramps, no bleeding, no indication that anything was wrong. And no one to tell me what to do next or what had happened.”

Barbosa describes the days after the loss as “confusing and bleak – though I couldn’t dwell too much on it as I had a toddler to care for. So thankful for her laughs and happiness to help me through the pain.”

Although September marked two years, Barbosa still thinks of the baby every time she hears someone has had a miscarriage. Still, she rarely brings it up, nor does her family – “I don’t think they are comfortable talking about it,” she says.

Her advice to others is “to not be afraid to talk about it openly and to find out as much as you can about why it happened in order to ensure that it may not happen again.

“I’ve never really been told why it happened. It was possibly a blighted ovum, however, it was discovered during my D and C that I had a polyp in my uterus, which had been removed at the time of my surgery,” she says. Speaking to a psychologist did help and is still helping, she adds.

The family finally got their rainbow in February of 2019. They welcomed Abigail, a sister for Jillian, during the biggest snowstorm of the year.

 

“I’m so grateful for his life and legacy”

 

Rebekah Shirey was so excited to be welcoming a second child.

 

In preparation for his July 2017 arrival, she enlisted a midwife right away. She purchased a birth tub and set it up in her living room, in preparation for a home waterbirth. She placed a crib to her bed, sidecar style, as she was planning to co-sleep. “My home was full of all the accoutrements that are needed for a new baby,” Shirey, then 29, remembers.

 

But perhaps most importantly, she took a road trip with her nine-year-old son, Noah, to Florida in April.

 

“My belly was really starting to ‘pop,’ and we could feel and see (the baby) move,” says Shirey, a nanny and doula. “My morning sickness had let up, and it felt like I was starting to glow. It was really special to share a trip with my two boys. It felt like our first adventure together. I just remember feeling so, so happy the entire time.”

 

But that happiness soon came to an end.

 

At 39 weeks and five days, Shirey had a routine midwifery checkup. She realized that she hadn’t felt the baby move, and when she learned that he had passed, she was in shock.

“It felt like a bad dream,” she says. “I kept telling myself to just breathe in and out… Just thinking about that day still gives me anxiety. The day I found out he was gone was the worst day of my life.” 

 

She named the baby – born July 29, 2017 – Elijah, a name she chose early on. But while she was planning his funeral, she realized the name was more significant than she’d expected. “I came across the story of the prophet Elijah. He never died. Instead, he was taken to heaven in a chariot of fire. That story really resonated with me.”

 

Elijah’s autopsy showed that he died as a result of a small placenta (less than 10th percentile for gestation and his size). Shirey sought both group and individual counselling through Roger Neilson House, where Noah also attended a sibling support program. She also got involved in a local community of loss moms. She thinks of her son everyday – “some days every hour, some days every breath. But it’s much more manageable now than it was in the early days, when the pain was so raw,” she says.  

 

Shirey donated her breastmilk to an adopted baby for eight months. “My pumping journey was a big legacy piece and an important part in my healing and staying connected to Elijah and still being a mom, despite not having a baby physically with me,” Shirey says.

 

“It’ll never be okay that Elijah isn’t here. I’ll always miss him. I’ll always be angry that he died. I’ll always wonder ‘what if’ and ‘why.’ There are still days when it feels like it was all a bad dream and I’m waiting to wake up. There are other days when I’m so grateful for his life and legacy and the woman he helped me become.”

 

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10 facts about pregnancy after loss

By Alexis Marie Chute

As someone who has lived through two subsequent pregnancies after loss, here is what I’ve learned: 

1. You can’t escape your fear, but you can learn to live with it. Acknowledge your trepidations, which will help them not to have power over you. Talk about your anxiety with friends and family members you trust. A professional counselor can be immensely beneficial.
2. It will be a long nine months, but every day is an opportunity for gratitude. When you have lived through the worst-case scenario, you know all that can go wrong. There are risks at every stage of pregnancy, but this is where faith and hope come in, along with a good dose of deep breathing and mindfulness. Be thankful for every day you carry your child.
3. Embrace the friends and family who “get it,” knowing not all will. Some people will feel uncomfortable with your loss and will prove unable to positively respond to the unique stresses of your next pregnancy. Those are not the people to spend your time with. Choose your confidants wisely and keep them close. They will be your anchor as you weather the storm.
4. First priority: take care of your basic needs. Get out of the house and breathe in the fresh air. Go for a walk in nature. Exercise. Raise your heartrate and break a sweat. Eat healthy foods, rest when you can, and make sleep a priority. These things are not just for your maternal health—they are also to fuel you to thrive as someone who is simultaneously grieving and expecting.
5. Create room for your heart and mind to heal themselves. This means slowing down to be reflective and mindful. Take up yoga or develop a meditation practice that feels right for you. Write in a journal to pour out all that you normally bottle up. Clean out your closet or the garage as a symbolic gesture of removing that which does not serve you so that you may fill up your life with objects, ideas, and dreams for who you want to become.
6. Preparation prevents panic. Visualize yourself giving birth to a healthy child. Imagine yourself in your birthing place, feeling calm, centered, and excited. Mindfully pack your hospital bag and decorate your child’s nursery. These are acts of faith. Contact the hospital or other birthing facility where you will be delivering and ask to visit the space beforehand to help yourself feel comfortable there.
7. Express yourself creatively. Engaging with artistic practices—painting, sculpture, photography, dance, music, improv—allows you to tap into the right, creative side of your brain. This is the part of you that is attuned to child-like play and accepts that there is a beautiful mystery to life; that it is okay if not all our “why” questions are left answered. In this headspace, our subconscious mind is free to come up with ideas on its own to help us move through our grief and thrive through our pregnancy after loss.
8. Grief lingers, even after you give birth to your ‘Rainbow Baby.’ Rainbow Baby is a name bereaved parents often call their child or children born after their loss, after their storm of sorrow. While giving birth to a healthy child does not remove the pain of loss, it is a healing experience to hold a living child in your arms. Still, we must learn to incorporate all our experiences into our lives in a way that allows us to live with joy and honour the baby no longer with us.
9. Parenting after loss is not easy, but it is rewarding. After we have experienced the loss of a child, it can be hard to let go of the worry for the health and safety of our living children. This is normal and proves another opportunity to express gratitude for each day and learn to release what we cannot control.
10. Love never dies. Even after heartache, we can choose to hold on to the love, not letting our pain define us. The love is the important connector between us and all our children, and love lives on even after death. We can continue to remember the life of the child who died and celebrate him or her as an important part of our family.