The loss of twins – Patience’s story

Patience 3

Sadly one of Patience's twins passed away shortly after birth. 14 months later, her surviving twin lost her own battle.

My husband and I have been married for 10 years and have gone through four failed IVF treatments, gynaecological surgeries and a very difficult time in the hope of having a child. We finally gave up and started the adoption process with our council. After the first meeting and registration, we decided to try IVF one last time. This time the treatment worked – I was pregnant.

Hardly daring to believe it, we must have taken half a dozen pregnancy tests that morning and a million more before my first scan. The scan revealed even more exciting news – there were two viable heartbeats – we were having twins! At 16 weeks we found out that they were identical girls. We felt shock, happiness and fear wrapped into one.

Just like our IVF journey, the pregnancy itself was very difficult from the first week. At 22 weeks my amniotic fluid started to leak so I was admitted into hospital and given a course of steroid injections to help the babies’ lungs mature. Within days, the girls and I all got an infection and I went into spontaneous labour.

My beautiful girls came at 23+5 weeks and I knew something was wrong. There was silence in the theatre and my husband had gone very pale. Our daughter Eliana took one long, stressed breathe and closed her eyes forever. I was allowed to hold her in my arms while delivering her sister. Eliana was only in this world a few moments before taking a part of my heart with her.

Her sister Eliora arrived four minutes later weighing a mere 590g and was put in a plastic bag and transferred to NICU. I felt helpless as I could not see her and did not know how she was doing. Then the bereavement nurse came to take away Eliana. I lost my mind and kept screaming.

The loss of my firstborn meant those first few days in neonatal now seem a blur. I was numb from my grief but the nurses and doctors did everything they could to help lessen the pain. A purple butterfly was placed on Eliora’s incubator to represent that she had lost her sibling and save me having to explain my story to every new healthcare professional we met with. I was relieved and thankful that they did this for us.

The bereavement nurse also gave me a memory box, some Bliss literature and helpline phone numbers. She put our lost angel in a beautiful outfit and decorated Moses basket. A priest came and blessed the body and I signed her over to the hospital for a funeral as my husband and I were in too much grief and disbelief to make arrangements.

Patience 2

Meanwhile, it was very difficult for me to care for Eliora. During the first three weeks I was useless. My husband stepped up and took charge of her personal cares and everything else. When I tried to touch Eliora I’d burst into tears and every so often the nurses had to sit with me somewhere else to calm down. They said babies sense energy and it is important to remain positive.

Our girls were identical twins with exactly the same features so I feared fate would repeat itself. When Eliora got another infection I thought she would not make it like her sister and blamed myself. I insisted they test my breast milk to see if it caused the infection which I now realise sounds ridiculous.

I wasn’t eating, sleeping or taking care of myself and lost weight. I got referred to the hospital psychologist and after our chats things began to improve. She explained the grief process and listened to my fears and worries and encouraged me to try some kangaroo care. The first time my baby was put on my chest was heaven. She was so tiny and I was trembling. The next day I was a different person eager to learn how to feed and clean her.

It feels very weird when people say: “Look on the bright side, at least you are not left empty handed.” If you are ever comforting someone who has lost a twin, please don’t try to turn their surviving child into some sort of “silver lining”. We love each baby equally and have the right to feel heartbreak over the one we’ve lost. There is now a void that cannot be filled within us even when we’ve only known that baby for just a minute. If you must say something, saying “Sorry for your loss” would suffice. Never try to liken it to another death or claim you understand what we are going through; just sit with us in our grief.

To the parents reading this that have lost a twin; cry and be withdrawn if you need to but also look towards those around you for support. Keep a memory box and a journal if you want to. It also helps to speak to a professional as they always have a different perspective.

Since writing this blog, things for Eliora took a turn for the worse and sadly we never got the chance to take her home. After an incredible 14 month battle we lost her after she developed bronchomalacia. With the added complication of her chronic lungs disease and extreme prematurity she didn’t stand a chance.

We are thankful for the support of the brilliant medical team that cared for us all - as well as the support of Bliss - but we are devastated to be left with empty arms.

As we learn to cope with the deep grief we feel we are thankful for our time with Eliana and Eliora who made us parents and changed our lives forever. We will never forget them and their memory will live on.

If you have been affected by any of the issues mentioned in this post and would like support, you can view our online support pages.

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