Julia’s story

This is a story of love, Julia’s story.

My name’s Carolina, I was born in Brazil and moved to London in 2016. I’ve always dreamed to be a mum to a little girl, but time passed, and I never found a partner who I wanted to share my life with or who I trusted enough to have a child with.

When I was 40 years old (2020) I decided it was time to take matters into my hands, so I got pregnant via IVF with a sperm donor. The IVF process itself is violent and full of uncertainties. Going through it alone was challenging and terrifying, but all these feelings disappeared when I got pregnant on the first try, transferring one 3AA embryo.

Although I was terrified of the chances that I could miscarry, I got more relaxed once the first trimester passed and I got normal results from my NT ultrasound. Doctors and midwives would reassure me every time that everything was perfect with my pregnancy and my baby girl, despite my age (now 41).

I wanted to tell my family and friends about my pregnancy after the second-trimester scan – at that point, only a handful of people knew about it. My mum convinced me that it was about time to do it (keep in mind that because of Covid I wasn’t seeing many people face-to-face and I don’t have family in the UK, so it was easy to hide my pregnancy). I decided to tell the world that I was pregnant when I was 20 weeks + 4 days.

Everyone was thrilled. By that time, I knew it was a baby girl and her name Julia. I got so much love and so many messages congratulating me, I was overwhelmed with love.

Two weeks later, the day of my second-trimester scan arrived. I was 22+3 weeks pregnant. I arrived at the hospital at 9:50 and everything followed protocol until a few minutes into the ultrasound. I felt some tension between the doctors, they were looking at specific areas of my baby girl without telling me anything. The doctors swapped places and then I saw Julia’s head on the screen. Her head wasn’t shaped as it should be.

The doctor said she didn’t like what she saw and that they had invited a specialist to see me. I asked if the situation had to do with her head and she said it had. That day I left the hospital at 19:30 with nothing but a piece of paper saying that my baby would not survive birth and with a recommendation for TFMR. That information hit me like a ton of bricks. I didn’t want to ‘choose’, I’d rather die than decide my baby’s destiny.

On that Saturday I asked for more tests, so the doctor recommended an amniocentesis and an MRI. I did both in the following weeks. The tests came back and it was confirmed that Julia had Chiari malformation type II and Meckel-Gruber syndrome. Chiari was responsible for an opening in her skull where the meninges was growing outside of her head and if she had any brain developed in that area, it would be outside her head as well. Meckel-Gruber syndrome is a rare, lethal genetic disorder that caused renal cystic dysplasia and central nervous system malformations (occipital encephalocele) in her. This meant that if she was born alive, she would die of either kidney or respiratory failure. I couldn’t decide whether or not to terminate my pregnancy but also didn’t want her to suffer.

As I mentioned before, I didn’t have a partner to help me with that decision. Despite a cousin who lives in Sweden, my whole family lives in Brazil. I told my mum, my two siblings and Leticia, my cousin who lives in Sweden, about Julia’s diagnosis and situation. None of them told me what to do. All I wanted was for someone to take the matters into their hands and decide for me.

I never thought I’d have such a perfect baby. But I never thought I would go through this nightmare and wouldn’t be able to watch her grow, take her to school and celebrate big and small moments with her.

I spoke with a geneticist and a paediatric neurosurgeon. The neurosurgeon doctor said something that I will never forget: “How do we take care of a baby whose brain is outside her head? How do we feed her? How do we hold her?”

On that day I understood that I couldn’t force my longed for and loved baby to suffer. I opted to terminate my pregnancy. My midwife was amazing, she walked with me through every step of the termination. She would see me in the morning before clinic or during her lunch to make sure I wouldn’t be among other pregnant women.

My cousin flew from Sweden to be with me. I didn’t want to go through the feticide process, I knew that I wouldn’t be able to live with that memory. So, I requested to be sleeping during the process and have a c-section. It took a while, but I ended up getting the birth I needed.

Julia was born sleeping on 24.08.2022 at 10:59. I was 28 weeks + 6 days pregnant. She was beautiful, she was the baby I dreamt to have my whole life. I never thought I’d have such a perfect baby. But I never thought I would go through this nightmare and wouldn’t be able to watch her grow, take her to school and celebrate big and small moments with her.

In her memory, I share our story with other families and I have become a spokesperson in Brazil fighting for families who lost their babies and are not treated with respect and dignity.

Thank you for the space to share our story.