Melissa's Story: Millie, Tennyson and Evelyn

A few months ago I received a message from Melissa, asking if I could take some family photos. But she wasn’t sure when, or if that might be, but would I be interested.

She was writing from a hospital bedside in Melbourne, from The Royal Children’s Hospital, with her then 7 month old daughter Millie. I could try to tell their story, but I won’t do it justice, so I asked Mel to send me some info. Here’s their story in her own words:

Millie was diagnosed antenatally at our 20 week scan in Albury/ Wodonga. She was born 19th November 2019 with complex congenital heart disease including double outlet right ventricle, mitral atresia, small left ventricle and hypoplastic aortic arch. 

We were told of the medical intervention that would be needed for Millie shortly after birth, however, no solid plans could be made until she was born. It was important to us that Millie’s brother and sister could meet their sister before any major surgery was needed. This was made possible by Ronald McDonald House Monash. Ronald McDonald Charity houses accommodate women and their families whom are classed as high risk pregnancies that live a significant distance away from the needed medical care, the day before my induction my husband, my mum and our 2 children drove the 359kms to Melbourne to start Millie’s story.

Millie was born screaming at 4:24pm weighing 2858gram, she was taken to the NICU where Tennyson and Evelyn got to see their perfect sister. On day 2 of life Millie was transferred to The Royal Children’s Hospital and our family transferred to Ronald McDonald House Parkville where I would spend the next 242 nights. 

On day four of life our children went home and Millie went into her first open heart surgery, her chest was left open and she had another 3 open heart procedures before her chest was closed. The next month flew by as Millie improved Tennyson and Evelyn returned and we spent our Christmas at Millie’s bedside. Our older two children had cardiac reviews on the 9th January after having some electrical heart monitoring done, this is the day our world came crashing down. Millie was back in ICU after becoming extremely sick on ward the night before it was 6am and my phone rang it was the hospital saying we should come over to the hospital Mark and I dressed Tennyson and Evelyn and started walking to the hospital. The hospital rang again Millie had a cardiac arrest, she received 6 minutes of CPR. That afternoon we had Tennysons and Evelyns holter monitor reviews we were told Tennyson and Evelyn both required open heart surgery for pacemaker insertions sooner rather than later.

After Millie’s cardiac arrest it was decided the first surgery wasn’t working so a new first surgery was needed the Norwood, however this would mean we wouldn’t be able to leave Melbourne until she had her stage two surgery the BCPC. Millie’s second open heart procedure was on the 13th January 2020, it was a long surgery and her little body had taken a hit the recovery was long. When it looked like Millie was improving something else would go wrong. On the 9th February Millie went into mobitz type 2 heart block which meant she also needed a pacemaker, however, she still had an infection called chylorthorax from the first surgery. On the 20th of February Millie went in for her third open heart surgery a pacemaker and duct ligation. Millie recovered and moved to ward on the 18th March.

With COVID Tennyson and Evelyn’s surgeries were postponed on a few occasions. So on the 20th March, Evelyn went in for her open heart surgery the Friday and on Monday the 23rd Tennyson went in for his open heart surgery. On the 24th March we had our whole family sleep under the same roof for the first time ever on ward. Evelyn and Tennyson were both discharged by the end of the week but we were told due to COVID they were not allowed back up to ward to see their sister. They spent the next week recovering at Ronald McDonald House before getting the all clear to go home. My husband and I due to COVID lock down decided it was better for them to recover at home where they had space to run and play.

So on Easter Monday after spending Easter together my husband and children went home they visited on 2 more occasions, one being Mother’s Day. 

Millie bounced between ICU and the ward from April to June, Ronald McDonald House gave me a home. When Millie was in ICU, I wasn’t allowed to stay with her and while on ward it gave me a place to escape to. After waiting 4 months Millie had her stage two surgery the BCPC on the 26th June. With the risk of COVID increasing again my husband and children didn’t return. Millie was discharged from the ward to Hospital in the Home on the 13th July. A nurse came to Ronald McDonald House to check Millie’s vitals until ward follow up on the 22nd July, where at 8 months of age Millie was given the all clear to go home.

Millie and I returned to NSW alone due to border closures on the 23rd July I couldn’t pack our car fast enough. I squealed with pure joy as we drove past the ‘Welcome to Albury/Wodonga’ sign than proceeded to bawl my eyes out, that sign means more than anyone will ever realise to me. As I turned into our court and I saw my kids running on the lawn and Karen waiting across the road the tears fell down my cheeks.

Eight babies are born with a heart condition in Australia every day, and sadly 4 lives are lost each week. I am so fortunate to have my three children with me today.

You can donate to the Ronald McDonald House Charities here

Mel and I kept in touch and she let me know when she was finally on their way home. I wanted to capture the moment that they finally got there, home after 8 long months.

As they had been in Melbourne, they had to isolate at home for 14 days, then they were due to all return back to Melbourne for monitoring on all 3 children, isolate again for another 14 days. before they could finally start to get back to some semblance of a normal life. However, due to Millie’s compromised immune system, since their arrival home she has already had several visits to Albury Hospital Children’s ward due to complications with colds.

I returned back at the start of September to capture them home together, under one roof.

You can follow more of their story over on Instagram at https://www.instagram.com/holding_hope_hlhs/