Mum-of-two Aimee Baglin is currently the carer for daughter Eva and husband Luke. Eva was born with a complex congenital heart defect and has required multiple heart surgeries to survive. At the same time, Luke fell seriously ill. Here Aimee, from Sydney, opens up to Yahoo Lifestyle about what has so far been the hardest day of her life.
On the day my youngest daughter turned five-months-old, she had her second major open heart surgery to treat a rare and complex congenital heart defect. She returned to ICU sedated, with a breathing tube and a five-inch wound in the middle of her chest.
At the same time, in a different hospital on the other side of the city, my husband was also in ICU. He’d had a major seizure as a result of massive brain swelling, caused by a very rare and difficult to treat fungal meningitis. I stayed with our daughter even though I wanted to be with my husband too, because I knew that I was exactly where he would want me to be. That was a hard day, but it wasn’t the hardest.
When I was 22-weeks pregnant in September 2016, a foetal cardiologist told us our daughter would be born with an incurable heart defect. My husband and I were given a choice: to terminate our much-longed-for pregnancy, to welcome our daughter into the world and love her with a lifetime’s worth of love before she died within days, or to pursue a series of major open heart surgeries and give us time. But this was time, not a cure. That was a devastating day, but it wasn’t the hardest.
There have been days sitting next to my unconscious husband’s bedside in hospital, the doctors stumped as to how to treat his illness. But none of those days were the hardest day either.
I’ve had a lot of happy days, and joyful days, and days full of celebration and miracles. I’ve had sad days, and angry days, and days full of fear and worry.
But the hardest day was the day before my daughter was due to have another heart surgery in April 2017.
See, she’d had her first open heart surgery when she was two days old on Christmas Eve, but she was bigger now and getting sicker, and she needed more modifications to her heart – more open heart surgery. But first the doctors had to check her heart was still strong enough, that her heart valves and vessels had grown big enough. If they hadn’t that was it, the end of our journey with our little girl.
Cruel twist of fate
And as our youngest daughter became sicker, and bluer and more short of breath in the lead up to this surgery, my husband had become more distant, and vague and spent hours of the day lying in a dark room.
He told me he had a headache, that he felt sick, and multiple GPs and a trip to the Emergency Department (ED) resulted in antibiotics for chest infections that weren’t there, referrals to physiotherapists for muscle stiffness that didn’t exist, a diagnoses of postpartum depression that was believable but still not quite right.
And when he couldn’t get out of bed to join our daughters on their Easter Egg hunt, and when he couldn’t stand up without vomiting, and I realised that he had lost 20kg in two weeks, I knew things were starting to circle the drain.
At 7pm on the 19th of April 2017, the night before we needed to be at the children’s hospital ready for surgery, I was standing outside medical imaging waiting for my husband to have an emergency MRI. A GP had finally listened and found something really wrong.
The thing is, I’m a nurse. And I know when other nurses are doing that thing where they’re smiling and biding time until the doctors come in and break the bad news. I know because I’ve been that nurse before.
The next five hours went by in a blur as my sick daughter slept in the pram by my side and my sick husband lay on a bed in incredible pain on my other side. Doctors frantically searched for a primary cancer, for melanomas, or unexplained lumps. He had full-body CT scans and neurological examinations. The neurosurgeon’s exact words to me were, “It’s really bad.” We were told to get our finances in order.
I called my mum who was looking after our three-year-old daughter, and said they had told me Luke had secondary brain cancer, they had found a mass in his lungs.
But it didn’t make sense because he was young and he didn’t smoke. And I cried as I did that Hollywood thing where I slid down the wall in a deserted ED corridor, somewhat uglier and with more tracksuit pants, dissolving into a mess of tears and sobs. And it was my fault that as a nurse I was so distracted by our daughter’s illness that I didn’t see him deteriorating in front of me. How could I have not seen how sick he was and how much pain he was in? I was so ashamed.
Then I picked myself up, brushed myself off and went back to my husband. I smiled and I told him we could do this, and we would do it together. Give Eva a kiss before her surgery, I’ll bring her back when we’re discharged.
Then I left him there with my brother-in-law and went home with our sick daughter so I could rest before having to drive her to the hospital for her heart surgery.
I went home and cried in the shower, because at that moment I thought that my husband had weeks not months without treatment, and with treatment he had months not years. I knew that potentially, our daughter would go into surgery the next morning, and not come out again, or that the doctor could tell us that this was the end of the road for her.
Finally some answers
But it turned out the doctors were wrong, my husband’s illness was definitely life-threatening and severe, but a biopsy revealed it wasn’t cancer and it was treatable.
Cryptococcal Gattii is a very rare fungus carried by gum trees, and he was just in the wrong place at the wrong time. It was one of the most severe cases in a young, healthy man that they’d ever seen and it would be difficult to treat.
Our daughter passed the qualifier, and her next open heart surgery was successful, despite being complicated by my husband’s surprise seizure on the same day.
As things are now
I want to tell you that he’s recovered now, I want to tell you that Eva’s heart is fixed. I want to tell you that Luke’s meningitis will be eradicated from his brain and that Eva doesn’t need any more open heart surgeries, but neither of those things is true. I want to tell you there haven’t been anymore hard days, but that’s not true either.
There are still days Luke is so sick that he can’t get out of bed. There are days when Eva can’t walk more than 20 metres without turning blue and losing her breath. I want to tell you that being a carer and supporting our family financially is no problem, that I have plenty of time to shuffle people off to their appointments and clinics and preschool, and enough money to buy the medication and the food and the things that we need.
The truth is that I can’t tell you if in 10 years I’ll be a widow with one daughter, or a happy family of four.
What I can tell you is that strength and courage and bravery don’t look like they do in fairy tales. Sometimes being brave looks like the little girl who offers out her hand to the doctor to put on the oxygen probe even though she’s scared. Sometimes being strong means getting out of bed despite the blinding headache and finishing the university degree you started when you were well. Sometimes being brave is stepping through the hospital doors and knowing that you’ll be there for the long haul but that you won’t have to do it alone.
There are hard days, and there will always be hard days. But there will be good days, and wonderful days and days filled with hope and laughter. I have to believe that there will be more of those days than the hard ones. I have to believe in the today where we’re together and we lift each other up and carry each other along. I have to be brave and have faith and hope and courage. I need to be strong for them. Because every today that we have together as a family is ultimately a good day.
As told to Kristine Tarbert.
The Baglin family joined the Heartkids community when Eva’s condition was diagnosed during pregnancy. She says the support since then has been invaluable. “HeartKids has been a big support for our family over the past two years and has made our journey a little smoother, a little less scary, and far less lonely,” Aimee tells us.
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