New Lungs

A tribute to the donor family

Last month, was the anniversary of Anoushka’s lung transplant. We had an uplifting day sharing memories and learnings on how her journey can help others. She was transplanted in the early hours of the morning. Hours before our Anoushka went through those ‘sliding doors”, the donor family would have lost their beloved child through another set of “sliding doors”. This post is in honour of the donor family and the inextricable link we share.

It was Anoushka’s decision to go for a lung transplant. In 2018 Anoushka was suffering acute respiratory distress following a pneumothorax (lung collapse). As I sat with her at The Brompton, she pulled my yellow jumper, bringing me closer to her and in between breaths gasped “give me your lungs”.

We were not in favour of a transplant because we and her medical team knew that Anoushka had an undiagnosed underlying condition that could lead to an unknown and worst outcome but her quest to live trumped rhyme and reason. In 2019 Anoushka was listed for a transplant just after her 6th birthday.

By this stage the general consensus was that Anoushka’s own lungs were at the end of their road. It was time to give up everything and devote ourselves completely to her.

“Anoushka I am giving up work, Daddy and I are devoting our lives to you. We will do all we can to prepare you for new lungs.”

“Really mummy, you’ll do that for me?”

“Of course Anoushka”

“But don’t your colleagues need you?”

“I’m really not that important Anoushka…You are”

“Oh thank you mummy”

Once listed, new lungs can turn up within hours, days, weeks or months. Little did we know that Anoushka’s wait would span over 500 days. I had raised Anoushka in Sanskrit prayer from in utero, chanting had helped us cross multiple chasms but we needed something more tangible to get us through the wait. In 2002 I met Mita Shah a yoga teacher, who did a lot of guided meditations for the body, often around a golden light. I used this technique to help Anoushka through some pretty tough situations. This time I created a meditation of a bridge:

“We are on a bridge. We don’t know how long this bridge is but each day we build a new step on this bridge. At the end of the bridge is a new set of lungs waiting for us.”

As we spent each day in a state of end stage respiratory failure, we often went back to our bridge. Anoushka would say “meditation” and I would paint a picture for her with my mind’s eye. She would listen intently.

One day she said, “it’s not a rickety bridge mummy, it’s a strong bridge.”

“Yes my sweet child” I responded, “it’s a strong bridge.”

The admission that spurned us all into action to list for a transplant was incredibly challenging as Anoushka struggled to keep her lung up. Life felt like it was hanging by a thread as I fielded calls from Great Ormond Street on how Anoushka was listed and ready to receive a donor lung imminently. I tried not to latch on to this hope. My job was to keep Anoushka going and ensure she was ready for a major life saving operation.

A month later and still in hospital, there were no lungs in sight. We decided to return home. Days passed in emotional turmoil and Anoushka wasn’t her usual chirpy self and when she finally burst into tears she cried,

“You don’t understand where those lungs will come from”

“Who told you Anoushka?”

She revealed that she had had a conversation with a transplant nurse whilst we met with her surgeon at Great Ormond Street. They didn't think to tell us that they had had this deeply moving conversation with our daughter. That they had described the moment when the lungs would be extracted. Anoushka was 6 years old at the time and sat with the burden that another child would loose their life for her. I held her as I contemplated the injustice of life here on Earth.

As time went on I would often think about the donor child. “Where are you sweet child?”, I would search for them in my mind, sending them love and sending their family love. Knowing that we both stood to loose our beloved children.

The days turned into weeks and the weeks into months of waiting for a donor organ. As we moved through multiple admissions, I sketched characters for her on the bridge. She was joined by her hospital team, family, friends and her school community. If we were inpatients l I would weave in the names of her nursing team, helping her feel secure on the bridge in the full knowledge that we walked with her towards her undying wish for a new set of lungs so she could live.

As I readied Anoushka to receive new organs I talked about how “we will accept them as our own”. I wanted Anoushka’s entire body to summon the strength to wait for new lungs and accept them as organ rejection was a key concern.

A year after being listed Anoushka suffered a major pneumothorax (lung collapse) in January 2020 and we made the difficult decision to commit to surgery knowing full well that she may not live. It ended in Anoushka being placed on ECMO, heart-lung support and in a coma. Anoushka had 15 mins of downtime as the team fought to save her life. This time we had three organs at stake, her lungs, her heart and her brain. The ensuing week on ECMO was excruciating but Anoushka and I had a deal.

“If I get intubated will you keep talking to me mummy?”

“I will be with you my sweet child.”

We were warned to take a bedside vigil and to be careful about conversation at her side. The bridge came to life as we all worked to see Anoushka on it. Her consultant arrived and broke the news that Anoushka had been delisted and that it was out of her hands. Expecting me to push back, I explained that this was out of everyone’s hands. “If it is in her kismet (destiny), she will will receive lungs, this is not in anyone’s hands.” Reflecting here this was a silly statement from me because you have to be in it to win it. Statistically, child donors are rare and then to have a match is even rarer, accepting she be delisted was relinquishing “Free Will”.

“What was I thinking?”

Well, I had a job to do, whilst the UK went into its first lockdown, I had my own lockdown. I locked onto Anoushka’s consciousness and melded my boundless love with hers. I had no other way of connecting with her other than through my love for her. The beside nurse gave me a quick lesson on the heart and I created a mediation, willing Anoushka’s arresting heart to return to baseline. With each ultrasound the heart started to return as the machines pumped blood through her carotid to keep her going.

There is a lot more detail to this tragic chapter in our lives but for now I want to focus on the power of visualisation and our ability to connect with one another even through the fog of comatising drugs. One of the biggest challenges we faced as parents of a child with a life limiting condition, as the parents of a complex care child, is the feeling of disempowerment. Your children don’t feel like they're your own, you have to share them with various establishments such as medical and educational. This leads to a loss of self and agency as a family. Talking to Anoushka even whilst ventilated gave me a voice in her life, a constant that I could continue from in utero and beyond. ECMO presented a unique opportunity for personal growth for me and deepened my bond with Anoushka.

Miraculously, after a week on ECMO and a further 3 weeks on ventilation, Anoushka extubated and sat up like a yogi. Her brain in tact despite the arrest. She went on to fight even harder and ended up on an oscillator, a ventilator that literally oscillates the body to keep the lungs going. Then, with very little chance of extubation, body swollen with every drug, news of donor lungs arrived.

Again, I returned to Anoushka’s bedside and chanted. Her vitals moved with the chant as her blood pressure rose with the sound of my voice. “Anoushka, this is the biggest chance of your life, go for it”.

It was one of the longest nights of our lives but that day new lungs waited at the end of Anoushka’s bridge and the donor family enabled us to move through a rainbow to give Anoushka in her words “a better life”, as she accepted their gift of lungs as her own.

This is an ink transfer created by me, overlaid with an etching of lungs

My hope is that this piece has inspired you to create your own visualisation for yourself and your loved ones. Build your own bridge, you’ll never know what chasms you’ll cross.

In loving memory of Anoushka Rohini Mistry and the Donor Child who will forever be a part of our family.

Amen

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