'The Stauffer family were condemned for 'rehoming' their adopted son. I understand their decision.'

I am a mother of two children: my toddler, Jasper, and his big sister Lily, forever ten months and 15 days old. Lily was born with a terminal brain disease and she died after a struggle with intractable seizures, on July 22 2017. 

My first year as a new mother was incredibly hard. As a first-time mum I had to grapple with becoming a special needs parent, a parent of a terminally ill child, and finally a baby loss mother. 

How I longed to be raising a healthy child that I could watch grow up. But it was not meant to be.

Watch: A tribute to the babies we've lost. Post continues below.

When Lily was alive, I lived each day in survival mode. There were terrifying nights and medical emergencies. But I tried my hardest to cherish every moment. 

Lily loved being at home with us. My husband and I set a goal that we would try to avoid hospital so long as it was supported by her medical team and we could cope. 

We are proud (though heartbroken) that she was able to die peacefully in our arms at home. 

View this post on Instagram

A post shared by Melbourne mum| Priyanka Saha (@thelilyflower_) on Oct 27, 2019 at 2:56am PDT

In recent weeks I have been following the story of YouTube and Instagram influencer Myka Stauffer and her husband James Stauffer, who ‘rehomed’ their adopted son Huxley, after welcoming him into their family for two years. 

Stauffer has been criticised for monetising Huxley through her social media accounts and then 'giving up' when his complex needs became too difficult.

According to Stauffer, the couple's reasoning for the decision included saying Huxley had “a lot more special needs that we weren’t aware of and that we were not told [about].”

Stauffer also claimed, “we’ve been trying to get his needs met and help him out as much as possible…We truly love him".

The decision has sparked outrage and an investigation into the wellbeing of Huxley and the couple’s other children.  

On the face of it, their decision may be easy to judge. But could it have actually been the right one, made in the best interest of their child?

I understand why a parent may find themselves with no other option than to place their child in another’s care. In fact, it might be the bravest decision of all.

Towards the end of Lily’s life, when she became very sick, I know it was only a matter of time before we couldn’t cope at home any longer.

I would have had to admit her to the hospital or the palliative care hospice if she had lived for longer. A decision which would have been made to allow her to die peacefully. 

I know of families with special needs children who have made the heartbreaking choice to place their child in care.

Families who love their children but made a choice based on love and professional advice. 

Unless you have been a special needs parent it is very hard to understand the potential complexities of another family's situation.

The constant anxiety and 24-hour care required. The expectation to be a parent but also a doctor, a nurse, a physiotherapist, a speech pathologist, a pharmacist. 

For some children, it is safer for them to live in another home. Their parents might not have the resources or ability to care for their needs adequately.

Some children may be at real risk of neglect or harm. We only have to look at shocking stories like the death of baby Willow Dunn to wish she had been put in the care of people who would give her the best life possible.

It makes me wonder, what really led to the decision made in the Stauffer home? What was going on behind the perfectly curated feed? Were Stauffer and her husband offered support? Was any respite service provided? How did Huxley’s siblings treat him? Was he safe in their home?

When Lily was alive, I had an incredible support network there to help me when I couldn’t go on. Friends and family ready to step in, dropping off meals and supplies, respite care if we needed it, and a good medical team. As Lily got sicker we were offered round-the-clock nursing support, just a phone call away.  

It is not clear if Huxley and his adoptive parents had any of this kind of support. But I do wonder, was it not offered because they seemed to be coping so well? Perhaps there was an expectation that they could do it all.

Or maybe the backlash is simply because Stauffer hasn't fully explained to her expectant audience the reasoning that led up to her decision to give Huxley away. But that, too, is hers to protect.

Priyanka Saha’s baby Lily died aged 10 months of a terminal brain condition in 2017. Prior to having Lily, Priyanka also suffered a traumatic and life-threatening ectopic pregnancy. After Lily died, seeing how little support was available to people, Priyanka wanted to use her experience to help others. Priyanka started writing about her grief on her Instagram account @the_lilyflower and her following quickly began to grow. Together with her husband she set up The Lily Calvert Foundation www.lilycalvert.com.

Priyanka is a lawyer and policy adviser. She has a master’s degree in conflict and dispute resolution and is a qualified conflict coach, skilled in finding reconciliation and peace. She brings her expertise to provide unique commentary and advice on surviving life after loss.