Lucy Sutherland: A mother’s incredible journey against all odds
Lucy Sutherland never goes anywhere without her infectious smile, the twinkle in her eyes, a charming disposition, and a grieving heart. Couple of years ago, when the Adelaidean and her fiancé Daniel fell pregnant with triplets, they were exhilarated but oblivious to the horrors that were set to unfold in the following weeks. Due to numerous medical complications, Lucy lost a daughter, and her two sons were born extremely premature, causing severe medical trauma to them. To give mothers in similar situations courage and solidarity, Lucy started penning her journey in her blog, Tinyheroes.
A rocky journey
When Lucy underwent a routine pap smear test due to suspected endometriosis, she found out that her body was housing the most volatile kind of pre-cancerous cells. “The only way to stop cervical cancer was to undergo a hysterectomy. Therefore, we were advised by our doctor to have a baby first before going ahead with the procedure. We have always wanted to have a baby, and after trying for two months, I fell pregnant,” says Lucy who loves playing the piano.
Before they could detect the pregnancy, Lucy kept falling violently ill. “I was so sick that I thought I might be having an ectopic pregnancy (where the fetus develops outside the uterus, typically in a fallopian tube). Our doctors prescribed numerous scans and blood tests, and the urgency with which they suggested them – unnatural so early into pregnancy – told me something was amiss,” she says.
The scans were undertaken to not only rule out ectopic pregnancy but also to check the persistently rising levels of Lucy’s hCG (human chorionic gonadotropin). “And, guess what, they were steadily tripling! The heightened levels of hCG indicated that I was carrying triplets. But, so as not to alarm me, I was not told about this development. There were a lot of phone calls and medical examinations, and that astounded me! At week five, during a scan, the sonographer pointed out the amniotic sac to me, and I innocently asked why were there three of them!” adds Lucy chuckling.
A high-risk pregnancy
The couple was aware of the massive risks embedded in a pregnancy such as theirs. “We knew this was going to be a high-risk pregnancy. We were asked to come for examinations regularly, and initially – except for terrible morning sickness – everything seemed to be going great,” says Lucy who was born and raised Sydney before moving to Adelaide a few years back.
But weeks into the pregnancy, things took a turn for the worse. “At 19 weeks, I was rushed to the hospital and was advised complete bed rest. I had a shortened cervix, and five days later I was asked to lie with my head down and feet up! My cervix had shortened so much they could no longer even get a measurement on it,” she says.
Unfortunately, in spite of the precautions taken, Lucy gave birth to a daughter – extremely premature - at 22 weeks. “My daughter, Olive was so small that she weighed only 400 gms. She passed away three days later," Lucy adds.
Given her fragile condition and the fact that she was still pregnant with two other babies, Lucy did not get a chance to mourn the death of Olive. “A distressed emotional state would not have been suitable for my other two babies. I tried to stay calm and dealt with the medical chaos unravelling around me. But I did look to Daniel for support; he was and continues to be my lifeline," she points out.
“To beat the stress, we used to play Uno a lot. And I did indulge in a lot of online shopping. That was fun!” says Lucy, displaying her admirable ability to find humour even in the darkest moments of life.
Giving birth to Olive put Lucy in labour with her son JoJo for six days. “The stress and anxiety were never-ending. And, once the boys were born through emergency c-section, they were fighting for their lives,” she says.
Giving birth to her boys
Due to the medical complications involved, Lucy was forced to prematurely give birth to her boys Atticus James and JoJo Hendrix who were born at 23+5 weeks gestation and weighed 550gm and 530gm respectively. “If I had to enumerate the health challenges they faced while at the hospital, I’d have to write a novel! JoJo has mild cerebral palsy due to a grade three brain haemorrhage on the right side of his brain developed at birth. At one point we didn't know if he would ever walk!” says Lucy.
“We employed the help of an early intervention team comprising a physiotherapist, occupational therapist and a speech pathologist. They taught us to perform physio at every nappy change and to incorporate therapy into every aspect of JoJo’s life. Thankfully, he is doing great now, his limbs have loosened up, and he is running around like a happy toddler!” she adds.
“Now it is only his speech that is slow. He also has chronic lung disease which is why he is still on oxygen,” she points out.
The couple’s other son Atticus is completely blind in his left eye and is short-sighted in his right due to an eye disease called retinopathy of prematurity (ROP) that is often seen in extremely premature babies. “In ROP the blood vessels in the eyes grow abnormally due to having to form outside of the womb, and causes the retina to detach completely. The hospital tried to save his eyes through laser eye surgery but sadly his ROP was too aggressive, and the retina in his left eye completely detached causing the blindness. He has glaucoma in his blind eye and will be undergoing an operation to relieve pressure,” explains Lucy.
Atticus also has central apnea, a condition in which the brain forgets to tell the lungs to breathe. “That is why he is also on oxygen. This is also a common issue among extremely premature babies. But once his brain matures, he will grow out of it,” she adds.
Since his birth, Atticus had to spend a considerable amount of time travelling in and out of hospitals. Soon after his birth, he underwent an immediate ear, nose and throat surgery. “Atticus had two huge cysts on either side of his airways, which forced him to breathe through the size of a pinhole. He was in NICU (Neonatal Intensive Care Unit) for almost 119 days after birth, and that caused the inflammation and cysts. He is about to have another operation to tidy up some more (much smaller) cysts,” she adds.
Given their weakened immune system and the various conditions hurting them, Lucy tries her best to keep the boys insulated and protected. “Last year on the advice of the hospital during winter we went into complete lockdown – no visitors or outings. If the boys catch a common cold, it can very quickly, given their weak lungs, turn nasty and become bronchitis. And, that would mean another hospital paediatric intensive care stay, which could set them back. No one is allowed over if they have been sick. I am the boys' full-time carer – no child care or back to work for me. I make sure the boys eat super healthy, and they have probiotics every day,” explains Lucy.
Despite the problems, Lucy and Daniel try their best to give the boys a normal and happy upbringing. “I try to keep their life as healthy as possible and try to expose them to the world but with precautions. We do lots of walks, zoo outings, cafe treats, etc. The most significant challenge for me is to carry two long oxygen cables and two very active toddlers that I am forever untangling," says Lucy.
Looking at the bright side
Lucy doesn’t let these challenges get the better of her. “Life could have been so much worse! I feel that we could bring JoJo and Atticus home because there was a strong possibility that all three of us could have died. And, since I have had my hysterectomy, I don't worry about having cancer," she says.
“The health issues we faced put our lives in perspective. I write about my medical journey on my blog Tinyheroes to give mothers going through something similar strength and courage. They might find solidarity in knowing that they are not alone in their struggles. I also hope to raise awareness about extreme prematurity. A lot of our friends and family don't comprehend the seriousness of such a situation and through our stories, people will probably understand the situation better and support a loved one going through NICU,” says Lucy about her blog.
Lucy is also extremely grateful to have her partner Daniel by her side. “He is incredible-truly one of a kind, and he will do anything for us. He will drop everything if we are having a sad day and goes above and beyond to support us all. And, he’s good at distracting me with backgammon and a cheeky cocktail,” she adds.
Trust your instincts
Lucy has a word of advice to all would be mothers. “Trust your instincts! If you feel something isn't right then speak up- mother's intuition is amazing. Mine has always been correct!." she says.
Even though the couple has created a beautiful world for their sons, Lucy would love to see her sons off oxygen cylinders. “Then all of us will have more freedom. We are trying to create memorable family traditions for the boys, like trying to work out a lovely holiday spot by the beach where we can go each year," she says.
There’s a discernible shift in Lucy’s voice as she talks about her daughter. “To be honest, I don't think a parent ever gets over the loss of their child. It was and continues to be the most painful and heartbreaking experience of my life. She will always be a part of me – nothing will change that," she says.
"I can’t break down; I have to be strong and be emotionally available for my boys. They need me, and I will do everything I can for them. Someday I'm sure I will look back at this phase of my life, and it will just be a distant memory!" says the mother, her smile still intact.
Follow Lucy, Daniel and their sons' incredible journey on Instagram.