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Planning for your Rainbow Baby

This post and episode has a trigger warning for parents who have experienced loss. 

Planning your pregnancy after the loss of a baby can be a very difficult and anxious time. There are thousands of worries running through your mind and you will want to check on the health of your baby constantly. But it’s important to remember there is also life, hope and joy after loss. Our next guest will bravely share her own story to help other parents open up and support each other to heal. 

In this episode, Brigid is talking with the inspiring and remarkable Priyanka Saha. Priyanka has founded the Lily Calvert foundation and set up the storytelling platform ‘The Murmuring of Ten Million’. She is also a lawyer, runs a cyber security company, and is on the board of a regional Victorian health service. 

Priyanka’s first-born daughter, Lily, died when she was just 10 months old from an incurable brain condition known as Miller Dieker Syndrome. She found out she was pregnant again only one week after the funeral for Lily. This was such a terrifying and challenging time for her and her partner trying to handle all of the anxiety and dread that there would be something wrong. 

Priyanka defines a ‘rainbow baby’ as sunlight shining through water to create a rainbow. This means allowing the happiness and the sadness to sit alongside one another – feeling happy does not cancel out your grief. Once you understand this, you will begin to find peace. 

Priyanka courageously shares her experience of parenting a child who is dying and speaks candidly about the realities of trying to conceive and go through pregnancy after loss. By sharing her story she is hoping to help others to navigate the highs and the lows, grief and joy, and the anxieties that exist during pregnancy and parenting your rainbow baby. 

TOPICS DISCUSSED
[1:40]: There’s no hierarchy on grief. Priyanka talks about the hierarchy of grief. She had an ectopic pregnancy and then one year later she was told that her baby would die and if she lived she would have severe developmental delays. 

[2:21]: People often tell her what has happened to them but it’s nowhere near as bad as what has happened to her. People tend to put a hierarchy on grief. Just because you think somebody else has had it worse doesn’t make your loss any less real. 

[3:08]: Every day 851 babies are born in Australia. 6 babies are stillborn and 2 die within 28 days of birth. 

[3:39]: Priyanka defines a ‘rainbow baby’. Sunlight shining through water to create a rainbow. For Priyanka, it means allowing the happiness and the sadness that you will always feel to sit alongside one another. 

[5:21]: Modern society often pushes the idea that we should be looking for happiness all of the time. But happiness can be fleeting. You can have a rich life filled with joy but also acknowledge that bad things may happen to you. 

[6:31]: Priyanka shares the story of Lily. She was born with a catastrophic brain condition. Priyanka was told she might die in the first night or the next day. After Lily was born she began breastfeeding and defied the odds. 

[8:09]: Lily traveled all around Australia and visited New Zealand. Even though she only lived for 10 months and 15 days, it felt a lot longer and was very full. 

[9:34]: If someone has a really serious diagnosis it can be so terrifying and scary. The idea in your head of what it will look like can be very different from reality.

[10:13]: There are lots of normal families that have plans that change but you can still have a beautiful life with hope. 

[10:33]: Priyanka and her partner were told that Lily might live for 2 years and potentially longer, so they had the idea that she would love a sibling. 

[11:12]: Priyanka found out she was pregnant with Jasper the week after Lily died. It was a very difficult time. Priyanka and her partner had support from a counselor and a psychologist. 

[13:59]: Priyanka did acupuncture during her pregnancy with Jasper. She also did genetic screening testing. Priyanka encourages everyone to explore screening for themselves and their partner to help them gain knowledge, understanding and to plan accordingly. 

[15:39]: Priyanka did the Counsyl Foresight Carrier Screen. Their results came back clear and it gave her peace of mind. 

[16:33]: Priyanka did a lot of extra ultrasounds with a fetal medicine specialist and a CVS at 12 weeks for peace of mind. 

[18:02]: Priyanka recently had a very early miscarriage. She was in QLD at the time and went to the ultrasound sonographer and had to go into the little bad room to receive the terrible news. 

[18:48]: Go to Episode 3 – What I wish every woman knew before becoming pregnant. Dr Pat will talk about the pre-pregnancy genetic screen that you can do for very common genes such as; cystic fibrosis, spinal muscular atrophy, and fragile X syndrome. 

[19:15]: Join us in our FREE masterclass on the most common mistakes we all make when we’re growing a baby. 

[20:09]: Priyanka recommends everyone to listen to the Episode on Ectopic Pregnancy. 

[21:38]: Getting the all-clear at 12 weeks, including the CVS testing, in Jasper’s pregnancy was really important for Priyanka.  

[22:21]: Priyanka anchored herself to the next appointment. She would have extra ultrasounds to check everything was okay. Post 20 weeks was very important to see the baby’s brain development on the ultrasound. 

[23:03]: Pregnancy after loss is like a marathon. You get a little peace of mind, then you freak out again, then you get a bit more peace of mind. It wasn’t until Jasper was in Priyanka’s arms that she believed she would have a living child. 

[24:02]: Priyanka did the 36-week ultrasound with Jasper and everything looked normal. By the time she was at 37 weeks, she made a plan with her obstetrician to be induced. She had an epidural very early on and she needed it to be a very clinical process. 

[26:22]: There’s a lot of glamourising natural births that can make women feel shame if they don’t choose that. 

[26:54]: Priyanka’s partner was just as anxious as her. They flew to Japan after they found out she was pregnant with Jasper and walked around in a daze. He had sessions with the psychologist. 

[28:19]: Priyanka and her partner would make sure they had honest and open communication when they walked together. Will was very open with people when Lily died. Priyanka learned that sharing about it helps others share their stories and makes the subject less taboo. 

[30:00]: People come to Priyanka’s page because they are going through a loss or know someone who has. It helps people to feel less alone, they learn to become more accepting of their thoughts, and have less judgment on themselves. 

[30:42]: Storytelling – The Murmuring of Ten Million. Connecting people with stories. 

[31:54]: Priyanka shares her practical tips for grieving and going through a loss. 

[33:06]: Priyanka is compiling everything into a book. Head over to Priyanka’s Instagram page to find some gifts you can give people who have gone through a loss. 

[33:55]: Communication is key during the first Christmas after a loss. Communicate with your family what you want to happen. For example, ‘we want to include Lily at Christmas, we’ll be giving her a gift and have a table setting for her’. 

[36:10]: Priyanka and her partner have been very upfront with Jasper in an age-appropriate way. There are resources on Priyanka’s website on how to talk to children about loss. 

[38:37]: In the past, they felt it was more compassionate to whisk the baby away after it has passed and not allow the parents to say goodbye. 

[40:01]: You have to acknowledge it, it hurts, but it’s better than letting it fester. 

[40:54]: Priyanka finds it energising talking to people online about loss and finds it keeps Lily’s memory alive. She has boundaries on social media though. 

[41:46]: People can feel guilty if they aren’t answering honestly if others ask if it’s their first pregnancy or only child. But it is your personal choice if that person deserves to hear your story. 

[43:22]: Priyanka talks about the Lily Calvert foundation. It supports paediatric palliative care and opens up conversations around grief after a loss. They’ve teamed up with Tiny Tones Australia and distribute music therapy kits all across Australia. 

[45:20]: From 1999 there’s been a decrease of stillbirth and neonatal death from 5.7% to 3.3 per 1,000. 

[45:42]: Priyanka longs for the day when the education is in place telling practitioners and people that it’s okay to acknowledge it. She also wants to have a way for people to stop having to repeat their stories to health care practitioners, possibly with a file. 

[46:43]: If you’re going through a pregnancy after loss, it will be okay. There is life and hope after loss. 

LINKS

Where to find Priyanka: