Story 70 - 04.10.2023
"My name is Nina. That was my identity name for the clinic that saved my husband and myself from the ongoing trauma.
When my husband and I first met, I asked him bluntly if he wants kids. He smiled. It was more than enough to keep this man, along with his other family values.
As a profession, I work in the health sector. I always was the first to pull up my sleeves and take children under my wings, distracting them from whatever injury they came in with. I love children. So much. I can't explain this strong feeling of wanting a child. I was told it's a mother's instinct.
My husband and I never used protection during our intimate moments. Our moto was simple, "If we are blessed with a child, so be it." And it happened. It was real. I missed a menstrual cycle. I made a HIT test [haemagglutination inhibition test - a pregnancy test] and it came back positive. We cried of joy and fear. My husband looked me in the eyes and told me, "This is our little family." Those words gave me so much to look forward to.
We started making a bucket list to plan financially. We both have good jobs and a middle class wage. Nevertheless, we like to save up and spend money on priorities. Baby bottles, next to me, a new bedroom that would allow us more storage for our new member, neutral baby clothes. We told my sister about the pregnancy. I had to tell someone. She was so happy to finally be an aunty! However, we planned to start telling the rest when we reach the second trimester and by then have some pictures to show.
The second trimester came by. We decided to reschedule our routine scan one week before to have everything in hand for week 16, the day of our announcement. Our early scan was done on 15.1weeks. During this visit the doctor was not sure about the scan. We were told the baby was ok, but there could be something in the fluid or the placental wall.
We were reassured the baby is just fine. But it would be ideal to visit a fetomaternal specialist. At 15.4 weeks, a specialist saw us. During this scan, we heard that beautiful heart beating, so fast. Such a beautiful sound. Until the doctor started showing us the area around the neck. The space around the heart. The arms. And legs. Our baby had severe cystic hygroma [fluid-filled sac] at the neck. Bilateral pleural effusion [excessive collection of fluid surrounding the lungs] around the heart, and skin edema [collection of fluid] known as hydrops.
Our sense of hearing just went shut. I saw their lips moving. No sound came out of it. I am not a doctor specialist in obstetrics, but I am a health professional with experiences in caring for dying adult patients both in pleural effusion and severe skin edema, as well as having a proper research background.
We left the hospital knowing that our baby is severely sick. No proper plans. Just scans and scans and more scans. All ending with "confirming the diagnosis."
After doing our own research we confirmed the prognosis, which basically was death in the womb. We also found a research study of our same situation, same amount of weeks. The research study was conducted after a TFMR (termination for medical reason) – also known as abortion.
In other countries, the plan given to mothers going through this was TFMR. So I asked my doctor, if the baby will really just die inside of me – what is the plan for me and my baby? Is there treatment I can take to help my baby?
The answer we got was, "Yes the baby will die inside of you." We don't know when. But it will. The heart will be under pressure with the fluid surrounding it. The baby will die of cardiac failure. The plan was to monitor with weekly scans. The plan was for me to carry on with the pregnancy. Start showing. Start getting congratulations, only to tell them "Thanks, our baby is sick, we are waiting for a cardiac failure and death."
It sounded horrible. It sounded disturbing. I was crying every single day, every single night. Going to work and crying. No one knew what I was going through. I couldn't do activities of daily living. I stopped caring for myself. I couldn't work and cried at work and left with sick leave. I made my husband miserable with me. He tried so much to support me and be strong for me, crying when I was not looking.
That week... on week 16 we were planning to tell everyone in our family during lunch time, most especially my mother. Instead, we missed lunch and we spoke. We spoke and we cried and we hugged. And we talked about how on week 18 our baby will have a complete nervous system. If our baby makes it beyond the 18th week and suffers a cardiac failure, there will be pain. Our unborn child will experience pain from the very first moment. If I start showing a baby bump, and my family find out that our beautiful baby is dying and suffering, they will be also devastated and miserable with us.
We decided to keep this a secret and seek help abroad and terminate our pregnancy for medical reasons. I asked and asked and asked for a medical report from my doctor, ultrasound pictures. We had nothing at hand. The doctor we paid privately to follow our lovely journey found one excuse after another – from the dog being sick to being on leave – and refused to write a report. It took us 17 days to get an official report. A report that as a mother was my right to have in the first place.
During those 17 days we saw a number of doctors. Doctors who understood that we want to terminate our pregnancy for medical reasons. They spoke to us behind closed doors. No medical students were allowed to stay during our visits. Doctors telling us, "If it was me going through this experience I would also go abroad and terminate my pregnancy" or even worse, "In a civilized country, with your baby's diagnosis, the plan would primarily be to terminate the pregnancy." I was told to "remove my Maltese mentality" and that we are doing "the right choice."
But although this was their belief, they only shared it and informed me about TFMR after my husband and I found out about the option. And they kept telling me not to speak with anyone, as all this is illegal.*** Not to write to them, to delete messages, and not mention their names. One doctor even mentioned a clinic, but we had already contacted the Abortion Support Network (ASN) for help and advice by then.
In a research article I read about a pill, misoprostol, and that the mother, undergoing TFMR, was given 6000mg. I looked it up. It was available from Amazon. My brain went shut and prior to proceeding with the payment, I contacted an NGO. They directly called me. They pleaded me not to. They repeatedly asked me not to take any medication. It was not safe. They told me I would bleed. I would require assistance. They guided me to safer options, took the time to explain to me that I can terminate safely. It was then when my husband and I were introduced to ASN, after seeking help from a Maltese professional. ASN started with checking on my emotional state, my support system, and offered financial help. They guided us to a safe clinic. I was directly contacted by the clinic in the UK, and the moment they learned about the abnormalities, I was transferred to an escalation team.
On week 17, my husband and I managed to go abroad. We took the first flight, booked the nearest accommodation, travelled on trains for the first time to give up our beautiful child on week 17.1.
It was a dark morning. We walked to the clinic silently, hand in hand. We were greeted so well. Treated with such dignity. Everyone we encountered started by introducing themselves and telling us how sorry they are to learn about this misfortune of ours. I felt calm. My husband was scared – I could see it in his eyes. The midwife gave us pictures, allowed us to hear that tiny, considerably low heart beat. Such a beautiful sound.
A researcher came to us discreetly and asked us if it was possible to have our baby tested after the procedure to help future research due to the abnormalities. We accepted. The clinic offered and arranged for genetic testing to learn why this had happened to us. We cried, all three of us: the researcher, my husband, and myself. We supported each other in a way I can't even explain.
I was then put asleep. Pregnant with my baby. Our beautiful baby. Then I woke up empty. Empty but relieved. A discharge nurse explained to us how to care for each other, how to care for ourselves individually as a TFMR mother and father. And lastly, the nurse gave us a picture of our baby's footprint.
We smiled. We cried. But we were relieved. Relieved our beautiful baby would never ever know what pain feels like, even though this journey for us was only a painful one.
A few weeks later, we received a call from a clinic informing us about a NIPT [noninvasive prenatal testing] result, a blood test done in Malta. A doctor I have only seen once and had nothing to do directly with my case. But we looked forward to know the results of the test.
When we went in, the doctor thought I was still pregnant. We sat and he closed his eyes telling us that he doesn't know how to tell us the news. Before he continued, we told him that we terminated our pregnancy. I swear, his eyes watered. He grabbed my hands, pressed them, he looked into my eyes and he literally said "Brava." Just that. Our baby was at a very grievous stage with Monosomy X [Turner syndrome]. He explained that most miscarriages happen exactly due to this condition."
*** Please note that there are no laws in Malta that prohibit the provision of information. But because abortion is criminalised and stigmatised, there is a lot of fear and confusion. There are no guidelines on what information to give people seeking abortion and how to do this, so there is a lot of misinformation about the topic. Some healthcare professionals (wrongly) believe that they are not allowed to speak to their patients about abortion or to provide information about it, and that there may be legal repercussions if they do this. And so, those who do give information may choose to do this in secret. This 'chilling effect' may jeopardise access to accurate information and timely care. Another thing to note is that an abortion done outside of Malta does not fall under Maltese jurisdiction and so cannot be prosecuted locally. People in Malta can safely travel to countries where abortion is legal and accessible, such as England and the Netherlands. Read more on the provision of information (pages 6, 7, 13) and on the chilling effect (pages 9 and 13) on health and social care providers in Malta in this report: https://livrepository.liverpool.ac.uk/3128310/1/MaltaBriefingPaperMay2021FINAL.pdf