This series of personal stories from parents who have suffered pregnancy or baby loss holds space for talking about loss and grief and remembering our babies gone too soon.
In sharing their stories about their pregnancy journeys, feelings and insights, these parents are beginning to exorcise the double demons of silence and ignorance that afflict so many conversations in the space of pregnancy and baby loss.
Parents share their journeys and the lessons they have learned about grief, parenthood, friendship and living after the death of their baby. They tell us how they have changed, who they have become, and what truly matters now.
Angel baby boy Kylin getting a bath
The story of Kylin “Digit” James McLean
My partner and I had been trying for a baby for 18 months and just hadn’t had any luck. August 11th 2016 was the day I found out that I was pregnant. I was so happy, but so nervous to tell my partner. He was still at work, so I rang to see when he would be home and used the excuse “I want to know when to start dinner.” He said he would be home in 20 minutes. I was totally freaking out.
As soon as he walked in the door he said, “What's going on, you sounded worried on the phone?” I just said it was nothing and told him I brought him a gift today. Typical male, he wanted to know why. I handed him a necklace jewellery box that I had hidden the positive pregnancy test in.
When he opened the box he was speechless. It felt like days passed before he said something. Finally he said, “Really?” but the smile that came across his face was amazing. Finally things were working out for us. Our families were over the moon and couldn’t wait for the first grandchild on both sides to enter our crazy lives.
Our families were over the moon and couldn’t wait for the first grandchild on both sides to enter our crazy lives.
We did every test the doctors recommended, took pregnancy vitamins and I was very carful about what I ate because I loved this baby and longed for this baby a long time before I saw the 2 pink lines.
I am a really impatient kind of girl and just needed to know the gender, so I dragged my partner along to a private scan clinic that charged $150 to do an early gender scan at 13 weeks. We had two names ready, Kylin for a boy and Eden for a girl. That was the day our beautiful little love bug got named: Kylin James Mclean. We did a cute little cupcake gender reveal and people loved it. I couldn’t believe that we were making this absolutely perfect little human who checked all boxes at every appointment and scan.
That was the day our beautiful little love bug got named: Kylin James Mclean. We did a cute little cupcake gender reveal and people loved it.
Fast forward to 20 weeks. My brother had just turned 18 and we had a party for him on the 3rd of December. He didn’t even care that his big sister couldn’t have a drink with him because he was so excited to become an uncle. Even though it was his birthday, I got a lot of the attention and people asked about how I was going and how Kylin was. I answered “he is absolutely perfect”.
Monday the 5th of December was our 20 week scan. The technician confirmed that our little boy was growing perfectly and gave us a picture as we walked out. My partner dropped me home and went off to work. I sent the ultrasound photo to our family and close friends.
About an hour later I got a phone call from a number I didn’t recognise. It was my doctor. He said, “Paxton I need you to come in right away and get a referral to terminate your pregnancy. Your baby isn’t ok.” Then he hung up.
It was my doctor. He said, “Paxton I need you to come in right away and get a referral to terminate your pregnancy. Your baby isn’t ok.” Then he hung up.
I didn’t know what to think. I walked out to the kitchen and asked my partner's mum to take me to the doctor's. When she asked why I burst into tears. When we got there, everyone already knew who I was. They all had this stone cold look on their faces, like they had just seen a ghost.
I was taken through to the doctor straight away and he handed me a piece of paper that said there were gross abnormalities on my son's heart and brain. He said to go to emergency right away. I tried to hold back my tears as much as possible while I rang my partner and asked him to meet me at the hospital because there was something wrong with our little man. Once I got off the phone I had to ring my mum. As soon as she said 'hello' I started crying hysterically and couldn’t get any words out. She tried to calm me down so I could speak. Eventually I said “The doctors said I have to terminate.” I started crying again and just kept saying "I don’t want to say goodbye.”
“The doctors said I have to terminate.” I started crying and just kept saying "I don’t want to say goodbye.”
We got to the hospital and waited and waited. We got taken to another room and waited, got taken somewhere else and waited and finally someone told us to go home and that they would be in contact with an appointment time to get me looked at. On the way out I rang my boss to say I wouldn't be able to come back to work for a while.
Two weeks I waited for a phone call. I rang every few days to see if anything had been sorted. Two weeks I sat in my room not knowing what was happening, or if my baby was ok. Two weeks I had to listen to people say "Just stay positive!" Believe me, I was trying. But I wasn’t given any information to help me stay positive. Two weeks I sat in my room and didn’t say one word to anyone because I just wanted to be alone with my son.
Two weeks I waited for a phone call. I rang [the hospital] every few days to see if anything had been sorted. Two weeks I sat in my room not knowing what was happening, or if my baby was ok.
We got a phone call to say that in 2 days time we had an ultrasound booked in the fetal medicine unit. Yup, that doesn’t sound good. Our families came with us and when we got called through to the scan room, they went to a consultation room. The sonographer was absolutely fantastic and apologised for the way everything had been handled up to this point.
He carried out the scan and confirmed I was carrying a boy. When the scan was finished, he said "I can tell you that your little boy has an extra finger. We just need 10 minutes to go over the pictures and then we will come in and let you know what's going on." I walked into the room where our families were waiting and said “He has an extra finger.” I started to cry, not because of his finger - because how cool would it be to have 6 fingers? - but because I knew there was more to come.
“He has an extra finger.” I started to cry, not because of his finger - because how cool would it be to have 6 fingers? - but because I knew there was more to come.
When the doctors came in they began to explain what they had seen on the ultrasound. They said Kylin's heart was pointing the wrong way and the two most important chambers were significantly smaller than the average size for that gestation. He also had a double cleft lip and pallet, as well as a hole in his diaphragm.
Once the doctors had gone through their findings, they said all these different things line up with one particular condition: Trisomy 13, also known as Patau syndrome. The next few moments is where time stood still. “If your son lives to full term, he will pass shortly after birth. With how bad his heart is, he really won’t survive much longer.”
I was being so “strong” people kept telling me, but in reality I just didn’t know what to feel at that point. The doctors went on to explain that if we let our pregnancy progress past 24 weeks, they would have to insert a needle through my uterus into Kylin's heart to stop it from beating when it came to giving birth. This is because after 24 weeks gestation, he would be in unbelievable amounts of pain if he was born breathing.
I was being so “strong” people kept telling me, but in reality I just didn’t know what to feel at that point.
They also said they would have to do an autopsy. That was one thing I was not ok with. We were going to lose our son - no matter what the circumstances, I would not let them cut him open. So I asked if there was another option. The doctors said I could have an amniocentesis, which would confirm the diagnosis of Trisomy 13 and then no autopsy would be needed. So that's what we did.
After Friday's amniocentesis confirmed the diagnosis, we were told to come back on Monday so that I could be given a tablet to stop producing pregnancy hormones. On Wednesday I would be admitted to hospital and induced to deliver my son as an angel.
I didn’t sleep at all Tuesday night as I wasn’t ready for Wednesday to be here already. But into the hospital we went. We got there at 7:30am but didn’t get seen until 12:30pm. Once we got taken into the birthing suite, a midwife called Judy came in. She was absolutely lovely and was very apologetic. She only dealt with women in labor whose babies will be born angels.
A midwife called Judy came in. She only dealt with women in labor whose babies will be born angels. Judy took us to the angel cupboard, where we got to pick out clothes and a little blanket for Kylin.
Judy took us through what the induction process would entail (3 tablets inserted vaginally and then 2 tablets orally every 3 hours). I was allowed to get up and walk around and Judy took us to the angel cupboard where we got to pick out clothes and a little blanket for Kylin. After we took these back to the room we went downstairs to the cafe to have some dinner. But I started to get back pains, so we went back upstairs.
Around 8pm I was pretty uncomfortable but still said no to pain relief. My head wasn’t in a good space, and I believed that I deserved to go through this pain because my little boy had fought to stay with us for so long. At around 9:30pm my mum convinced me to get some pain relief, so they gave me a shot of pethidine.
I was pretty uncomfortable but still said no to pain relief. My head wasn’t in a good space, and I believed that I deserved to go through this pain because my little boy had fought to stay with us for so long.
Together, the induction pills and the pethidine were making me feel very sick. I asked my mum to help me go to the toilet, and as I stood up I got a rush of nausea. It was now around 11:20pm and my partner Cody got me to stand near the shower. He held the hot water over my back and I got so much relief from that. I felt like a whole new person. I stayed in the shower for about 15-20 minutes, then got back into bed and started feeling like myself again.
I asked my mum if she could get me some water. Just as she was re-entering the room, Cody rushed out to get the nurse. She asked what was going on. I said “He is here.” Mum said “Paxton relax, he won’t be here yet.” But I knew he was. I reached down and could feel him. “Have a look mum, he is here I know!” Mum lifted the blanket and immediately started crying. “He is here, oh wow he is absolutely perfect.”
I just wanted the nurse to come back so I could hold my little boy.
The nurse was as shocked as anyone. She couldn’t believe Kylin was here just like that. Kylin James Mclean was born at 11:45pm on the 21st December 2016.
Kylin James Mclean was born at 11:45pm on the 21st December 2016. Cody cried seeing his little boy for the first time, but I did not shed one tear. I didn’t want to waste my time being sad.
Cody cried seeing his little boy for the first time, but I did not shed one tear. I didn’t want to waste my time being sad. I wanted to make the most of the time we had, which was less than 24 hours.
We spent hours taking photos, bathing him, doing our announcement, taking his little prints and letting the rest of our families know he was here.
The next day was the first time we would have to say goodbye. We had to leave the hospital and leave our little boy there, waiting for the funeral home to pick him up for his viewing. Cody, mum and myself went down so I could dress him in his beautiful angel gown from Angel Gowns Australia and set up his bassinet for his viewing. He looked beautiful, just like the most peaceful sleeping baby. Our friends and family arrived to meet our little man. It was a far cry from a happy moment. This was probably the first time it hit me that the hardest part hadn't even happened yet.
Our friends and family arrived to meet our little man. It was a far cry from a happy moment. This was probably the first time it hit me that the hardest part hadn't even happened yet.
Christmas Eve 2016 was Kylin's funeral. I didn’t expect many people to come, what with it being Christmas Eve. But to my surprise the chapel was full. It even had people standing at the back. Kylin had so many people who love him. Why couldn’t our love have saved him.
The service was beautiful, although I don’t remember much. At Kylin's funeral, I spoke this poem:
If tears could build a stairway
And memories were a lane
We would walk right up to heaven
And bring you back again
No farewell words were spoken
no time to say goodbye
You were gone before we knew it
And only god knows why
Our hearts still ache in sadness
And secret tears still flow
What it meant to lose you
No one will ever know
Our family chain is broken
And nothing seems the same
But as god calls us one by one
The chain will link again
Once the ceremony was over, everyone went outside where my mum handed out balloons for a balloon release. Cody and myself walked in front of the car carrying my little boy to the end of the street. Watching that car drive off with our son, knowing we would never have another chance to ever look and hold him again absolutely crushed me. I knew that things were only going to get harder.
Being blessed with having Kylin has taught us 2 things.
We have the most amazing family and friends who want to support us.
He taught us to appreciate the little things, as well as showing us just how much love his mum and dad have for each other and the love we have for him.
The last thing I would like to say is to my little boy.
Mum is extremely sorry for what has happened to you. I wish I could do something to change the outcome. You did not deserve this at all. Here's hoping we can give you the send off that you deserve and keep your memory alive.
Mummy and Daddy love you little man, and we will continue to speak your name as loud as we can, even if it only impacts or changes one person's life. That I promise you Kylin.
I love you Kylin James xxxxx
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