Millie’s Story

Millie’s heart condition was detected at her 20-week scan and she had surgery soon after birth. But post-surgery infections were too much for her body to handle and, tragically, she passed away when she was one month old. Here, her mum Sam tells their story:

Millies heart defect was picked up at a private gender scan, a couple of days before our 20-week NHS scan. We booked privately so Steve and I could find out together what baby number two was going to be. Thanks to COVID, partners weren’t allowed to NHS scans. We already had Evie, who was three at the time. She was with us for the private scan too.

I lay on the bed, and sat and held Evie’s hand, while she held her Daddy’s hand too. Baby popped up on the screen, wriggling all over the place. Baby was making the sonographer’s job a little difficult.

The sonographer told us we were having another little girl, which was amazing! But the atmosphere in the room soon changed, as she carried out all of the checks. It’s all a bit of blur to me, but the one thing I remember is the sonographer saying, ‘There are some irregularities with your baby’s heart patterns’.

She referred us to our local hospital, Worcester, for an urgent scan. On Thursday 21st May 2020, a sonographer at Worcs told us she believed it to be Transposition of the Great Arteries (TGA) and referred us to Birmingham Women’s Hospital.

We had to wait two weeks for that appointment, and it was like hell on earth. You can’t help but hope they’ve got it wrong.

On the 1st June, we met with a wonderful paediatric cardiologist, who confirmed TGA with two VSDs (holes in the heart). As Mum, I questioned everything. Had I done something wrong? Was it something I had eaten or drank?

We found ourselves under the care of the Women’s Hospital for regular scans and check ups for the rest of the pregnancy.

On Thursday 1st October 2020, Millie Hope Chandler entered the world at 9:20pm. We were allowed a very quick cuddle, before she was assessed by the NICU nurses, who had everything prepared to intubate her. But she was a fighter! She was too happy, and far too noisy, for them to think about intubating her. Her oxygen levels were good, so they were happy.

They took her to NICU for a full assessment, and Steve and I were left in a suddenly quiet and empty delivery room. It’s frightening, when your baby is taken away from you. Soon though, the nurses were back to let us know she was stable, and Steve went to see her.

Millie was transferred to Birmingham Children’s Hospital at three days old, where she was cared for on Ward 11. She received Prostin and minimal oxygen to help her, but did really well. It was here that I was able to breastfeed for the first time.

Millie (and I!!) did amazingly. We were gifted bonding squares from a wonderful lady I had met through Tiny Tickers, so we each had a knitted square with each of us from day one. We would switch them every 24 hours, and they helped me to express up until we were able to breastfeed.

Millie had open heart surgery on the 12th October. It was the longest day of our lives! But the surgeons were amazing, and after six and a half hours in theatre, we got the call she was on PICU and we could go and see her. Her heart was fixed, but NOTHING can prepare you for seeing your baby with tubes and cannulas and drains everywhere. It was heart-breaking.

Our journey with Millie after surgery was difficult. Battles with infection and a cardiac arrest meant that Millie was on life support for three weeks.

Her little body couldn’t fight the infection levels, and her lungs suffered irreparable damage. Heartbreakingly, we lost Millie on Monday 2nd November, 2020.

Through the work that Tiny Tickers do, sonographers are trained to pick up congenital heart defects (CHDs) in unborn babies. We are lucky that Millie’s heart defect was picked up at 20 weeks. We were able to process what was going to happen. Prepare ourselves, as much as we could, for surgery day. And most importantly, the surgeons, doctors and nurses we needed were all on standby for Millie.

We are so incredibly grateful for the support of Tiny Tickers. They aren’t just a charity to help identify the defects. They are a support network for the families. They are now an extended family to us, and have provided Steve and I with help and love and support through our darkest days. We are so glad we found Tiny Tickers when we did.

Would you like to get involved in Millie’s Knit, to knit bonding squares for heart families? Find out more here.