A Mother’s Story of Neonatal Loss

Categories: Care and Featured.

We lost our daughter in 2022.  We called her Mykah Amiya Das.  She was at 5 months gestation when she was born, on April 25th.  It was so traumatic, it all happened in such a short space of time – I felt unwell, I went into labour, she was born, and then she died.   I wrapped her and held her in my arms like I would have done for my other children and I felt like a mom to her in that moment, even though it was only minutes.  It has allowed me, for however short her life was, to be able to say I was her mom and that I took care of her. 

You may need to find ways to support families in this kind of situation, providing them with palliative and supportive care through their intense grief and trauma.  I think this new ICPCN Enhanced Course on Neonatal Palliative Care will give many individuals the courage to do this. I want to share my story with you.   

My name is Erin Das, and I am a children’s palliative care nurse, originally from Canada, but now living in Kenya with my husband and three sons who are 8, 6 and 3 years old.   In 2021, I became pregnant again. It was a bit of a surprise!

When I was around 22 weeks pregnant, we went on a family holiday around Easter time and I noticed that I was leaking fluid.  I contacted my obstetrician when we got back and she said that everything seemed to be ok. But looking back I think it was amniotic fluid that I was leaking and that I had an infection. I’d not been feeling well over that weekend. I wasn’t bleeding but I knew that something wasn’t right and we went to the GP clinic in Nairobi, 5 minutes from where we live, where I started spotting and starting to have contractions. Unfortunately, our obstetrician was out of town, but during the 30-minute journey to the larger hospital we did manage to connect with our physician back in Canada, who had delivered our other three kids. He shared that they may not be able to stop my labour and was very sensitive and honest during the phone call. We were grateful that we were able to talk to someone we trusted before we got to the hospital.

By the time I got to the labour ward I was losing a lot of infected amniotic fluid.  I’d had three C-sections before and we’d been advised that this birth would have to be a planned C-section so it was hard when the Consultant explained that the only way to treat the infection was for me to deliver the baby. It was hard for my husband too because he wanted to advocate for what was best for me and it was not clear.  It was scary as everything was happening so fast.

I think about 2 hours after arriving I delivered.  The labour wasn’t very long but it was so emotional.  She was 500 g, so very small.  They have a paediatric ICU at the facility and the ICU specialist did take time to come and talk to us.  He said they were not usually able to provide support to babies until they were 26 weeks. Looking back that was something he didn’t have to do, but it was helpful for us to have someone come and talk to us from the unit where they would have cared for her.

After I delivered they let us have time with her.  We wrapped her in a blanket.  She was so little, but it was good to see her face. The obstetrician who’d helped with the labour gave us an oxygen mask. I’m not really sure it did much, but it made us feel that we’d had time with her. We didn’t really keep it on her for very long but it was connected and blowing oxygen on her face as I was holding her and  we have made it part of our story that she was alive for about an hour although it was hard to tell. She didn’t cry, she didn’t open her eyes, they didn’t check her heartbeat or anything. They didn’t tell us, they just gave us space.

We didn’t really know what to do with the other children.  A friend brought the two older ones to the hospital. They were wary of letting the kids in but they did allow us. The younger one didn’t want to hold her, but the 7-year-old did, so we got to take some photos and take hand and footprints.  We called our parents back in Canada so that was really meaningful.

When babies die prematurely like this there are the missed dreams of the child growing up, but there’s also such a minuscule amount of time when you can care for your child. I remember when we took her for cremation after she’d been in the morgue, she was cold, but I wrapped her and held her in my arms like I would have done for my other children and I felt like a mom to her in that moment, even though it was only five minutes.  It has allowed me, for however short her life was, to be able to say I was her mom and that I took care of her.  I didn’t have a chance to breastfeed her and do all of those things, but even in the very short time we had with her – probably less than 24 hours – we got to do things that we’d done with our other kids when they were newborn.

I had to go through a D&C and the kids went home at that point. When I woke up from the anaesthetic, I was so beside myself and I couldn’t stop crying.  The maternity nurse was scolding me and saying ‘don’t cry, don’t cry’ but there was no way I could stop crying. I think you’re so confused when you come round from anaesthetic.  Maybe culturally they didn’t know what to say.  They brought in my husband pretty quickly after that because I was very upset.

My husband was with Mykah while I was in surgery.  We knew she had died by then, but they didn’t rush her to the morgue. I don’t think the hospital had a protocol but somehow they knew that we didn’t want to leave her. We didn’t want to leave her at the hospital, but having spoken to the Pastor at the church we had to leave her in the morgue overnight as there was paperwork to sort out prior to having her cremated. That was really traumatic for my husband.  He took her there.  It was hard for him as there were so many small babies there. It will always be etched in his mind.

I was discharged the next night and we had her cremated the next day.  My parents came from Canada to be with us for a week or so.  A week after the cremation we had a service for her and we planted a tree and set up a bench for her. My husband organised a lot of that and it was helpful for him.   After her death in April, we had a difficult summer. We’d had plans to go to Canada for the delivery so already had flights booked, so we went and had a memorial service which was nice. Last Christmas was difficult but in April on the anniversary of the cremation we were able to go for a nice lunch with people who’d been there the year before.  I think we’ll repeat that next year and it will probably be something that we’ll try to do every year.

But the amount of stress and grief escalated during that time and I had a serious breakdown.  I needed medication. We had family counselling, but there’s still a lot of stuff to process.  In the first few weeks I really felt like I needed to be pregnant again, but that feeling has now subsided. In the following months after she died, I read a lot of books on grief and tried to listen to podcasts.  We connected with close friends who had been through a similar thing.  There was an urgency to talk to these people at the beginning, but that’s subsided a bit now. During those initial weeks and months, I really wanted to talk to others who had been through similar things!

Mykah wasn’t with us for as long as other children who need palliative care. She didn’t have pain, she didn’t struggle with a progressive disease, but it’s allowed me to understand grief and bereavement more than I’d ever have been able to understand it before.  I can pinpoint the moments when we benefited from a palliative care approach – the nurse who allowed us extra time with her, the ICU doctor coming to speak to us, the obstetrician who gave us the oxygen mask for her.  They may not have seen this as groundbreaking but it meant a lot to us and reassured us that we had done all we could.

My message to professionals is to find the small moments to be sensitive to families.  As a nurse I understand that you need things like visiting hours, but if exceptions can be made, I think they should be. In the moment it’s not a long time, but it can really help with processing grief.  Even just saying things like ‘what can I do to support you?’.  Families may not be able to answer but it’s important to offer.  Sometimes in this situation you just don’t know what to say but if you’re the only other person in the room, don’t just walk away. You don’t really have to say a lot, just ‘I’m here for you’. When someone’s in distress, it is important to be there for them.

I do feel that it would be so helpful if there was a way for hospitals to help more with the process of registering births and deaths.  My husband had to leave me for long periods of time in the hospital to do this and it was so difficult.   As a father you just want to be with the family, but the system isn’t set up for this.  Also, it would be so helpful if the physicians or nurses who have cared for us could signpost to and demystify counselling. Our physician strongly advised us to seek this when we were ready. We had trust in them and it was meaningful that they wanted us to be able to process well all that had happened.

Our community of friends in Kenya, including our church family, was a huge source of support for us. As a healthcare professional you can encourage families that you are supporting to reach out to the communities they engage with. Sending meals, visiting over coffee, sending cards, messages and emails were so important. We received many flowers and thinking back to those moments, they were meaningful practices of community mourning.

I would not wish this type of serious suffering, grief or despair for anyone, but it is part of my journey now and I hope to be able to, in sensitive ways, support others going through loss and pain.

Leave a Reply

Your email address will not be published. Required fields are marked *