Mia’s Story

By Niamh Connolly-Coyne

**********

I was so happy to be pregnant finally and to be pregnant on twins was so wonderful and very special. Our daughter Alice, who was four at the time, was also so excited about the arrival of two babies. It was such a special and exciting time.

As we waited in the waiting room for our 20-week anomaly scan, we were keen to find out what we were having – two girls, two boys or one of each. Twin 1, Emma, was scanned first. “It’s a girl,” the sonographer cheerfully told us. I could not believe it, considering my husband is one of seven boys. She went on to scan Twin 2, Mia. “It is another girl.” We could not believe it.

However, our excitement soon shifted when the sonographer went on to say that Mia had a few problems and that she wanted the fetal development specialist to have a further look. My mind was racing and wondering what condition Mia had. The fetal development specialist ran the scanner over my bump. She confirmed that Mia had a problem with her heart, extra fluid on her nuchal fold, slightly shorter limbs, and a slightly smaller head and that these problems could be caused by a chromosomal condition called Trisomy 18. That was the start of our bittersweet journey of highs and lows.

After two sleepless nights, we went back to the hospital for a scan of Mia’s heart with the cardiologist. The cardiologist confirmed the news that we did not want to hear – our baby had a very serious heart condition called hypoplastic left heart syndrome and that after she was born, she would probably only live for between 48 and 72 hours without significant heart surgery. She also told us that twins are often born early and therefore Mia might not be big enough for the surgery that she needed.

The twins continued to grow, and although Mia was a little bit smaller all the time, she was growing alongside her twin sister. The weeks passed and we were scanned regularly. We held out hope that Mia would continue to grow and that she would be big enough for surgery that she so desperately needed.

When I was 28 weeks pregnant, the amniotic fluid around Mia had increased so much that I could not feel her kicks and movements anymore because she was swimming around in so much fluid. We were offered an amniocentesis to find out what chromosomal condition Mia had. We were advised of the risks of the procedure and decided not to do the test as we wanted to protect Mia and Emma from being born too soon.

As the weeks passed by, the fear of not knowing the outcome for our baby became overwhelming. We wondered if she would die in utero, if she would live a few hours or days, if she would be big enough for heart surgery and if she would be able to come home with us even for a short while. It was very hard, but we stayed strong as we had to look after Alice.

Our lives were now driven by scans. When I was 30 weeks pregnant, I was admitted to hospital with pre-eclampsia. My blood pressure had soared, and my legs, face and hands had swelled up and I had headaches. From then on, my blood pressure was checked every four hours and the twins were put on a heart trace every morning and evening to ensure that they were doing okay.

Two weeks later, on the 18th March, I was having my first trace of the day at 7.30 in the morning. I knew by the look on the midwife’s face that something was wrong –she could not find a heartbeat for Mia. The fetal development specialist was called and confirmed that Mia had died. I called my husband on the phone, and after dropping Alice to creche, he came directly and was told the same news. We were shocked. We could not believe that she was gone.

Our focus then turned to keeping Emma safe and to grow her for as long as possible while still carrying Mia. Emma had taken a backseat in all of this. All our previous conversations with consultants had mainly focused on Mia. I grew Emma for another four weeks and amazingly, we made it to 36 weeks. It was a hard four weeks in hospital knowing that Mia had died, but I did get comfort from the fact that Mia was safe while I was still carrying her, and I dreaded the thought of her delivery because then she was going to leave me. I also feared how we would cope after the twins were born and Mia’s upcoming funeral.

As Emma grew, my bump got bigger and bigger. I was huge. Four weeks after Mia had passed, a c-section was scheduled for the 16th April in the afternoon. Our babies were born at 3.26pm and 3.27pm. Emma was born first weighing 6lbs 14oz and then Mia arrived one minute later weighing 3lbs 6oz. It was a joyous occasion for us tinged with sadness. We were so happy to finally see and meet them. Mia and Emma were placed in two cots beside me. They were very beautiful and very alike with the same brown hair and chubby cheeks. They were also like Alice too when she was born.

We took lots of photographs. A volunteer photographer from the charity Now I Lay Me Down to Sleep took some beautiful remembrance photographs too. They took photographs of the twins together, of Alice with her sisters, of the twins holding hands and of the five of us as a family. These are our most treasured keepsakes.

I wanted to spend as much time as I could with Mia during the day, so she stayed in a “cuddle” cot beside my bed and Emma’s cot. I struggled to spend time with them both just like any mommy of twins would. It was hard to find a balance between spending precious time with Mia and minding Emma at the same time.

Alice came into the hospital to meet her new baby sisters the day after they were born, and she was delighted to meet them both. We were very honest with her and talked to her about Mia in a way that we knew she would understand. Members of our immediate family came into the hospital to meet the twins as well.

After Mia was born, samples were taken from her skin, but unfortunately because she had died four weeks previously, the cultures did not grow, and we did not get a conclusive result.

As I was in hospital for six weeks, we got to know the hospital staff well. The staff were kind and they held and dressed Mia with respect and dignity. In the hospital chapel, with the help of the chaplain, we dressed Mia in a pretty crochet cardigan and hat. We wrapped her in a beautiful blanket and placed her in a little white coffin along with her teddy, a letter from us and a family photograph. We kept the same hat, teddy, and blanket for Emma to keep as a keepsake of her twin sister. We had a simple funeral service at home the day after I came home from hospital with Emma. We buried Mia in the graveyard five minutes from our home, so that we could visit her often.

It is now six years after Mia’s passing. Over the past six years, I have written a lot about our loss, which I found helped me in my grief and hopefully it helped others when they have read my stories.

When Mia was born, I realised that it was very hard to find information about loss in a multiple pregnancy in one concise place, so I founded the advocacy group Peas in a Pod – Loss in a Multiple Pregnancy, which can be found on Facebook at @peasinapodireland and Twitter at @PeasInaPodIre. I have also become part of the writing team for Still Standing Magazine https://stillstandingmag.com/author/n_connolly/.

I recently joined the board of directors of the Irish Neonatal Health Alliance and have produced several resources relating to loss in a multiple pregnancy, which can be found at www.inha.ie.

Through my volunteer work, Mia is remembered.