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Cristina and Joylen's story

15 August 2016

Mothers were waiting for their antenatal appointments in the outpatients clinic of the hospital, whilst doctors and midwives paraded up and down, with notebooks, calling the different patients’ names in slow-motion rhythm. Dozens of heartbeats created a symphony of eagerness, as if they were rehearsing one of Mozart’s symphonies. Unfortunately, for a small number of mothers, a dramatic reality was about to start. Their pregnancies would have a hasty, unexpected ending. All plans for a perfect normal delivery – the baby shower party and baby room decorations in tones of light blue and pink – would come to a sudden end. Their babies would be born prematurely.

For some women, their destiny is high blood pressure; pre-eclampsia; gestational diabetes; severe placental, womb or cervix problems; multiple pregnancies – these and other indicators of a premature birth.

I was 35 weeks when I was admitted onto the labour ward, after the doctors diagnosed me with a high stage of pre-eclampsia which meant I had a disorder in my placenta, detected by the high blood pressure, and protein in the urine. I didn't have any symptoms, but in less than 24 hours everything changed. My liver function levels were sky high, my kidneys weren’t responding and my placenta was no longer working properly. Suddenly my baby stopped growing inside me.

The doctor told me the disturbing news that she needed to take the baby out, to avoid a stillbirth, and that the only cure for the pre-eclampsia was removing the placenta by an elective C-section. Along with absorbing this news, I couldn’t stop thinking about my three-year-old child throughout my stay at the hospital – the only solution was for her father to quit his job and look after her.

I started to pray. For the first time ever I feared for my life, and I feared for my son’s life. I felt like a laboratory mouse, with the endless amounts of blood tests.

On 11 December, my son was born. It was supposed to be the best moment of my life but it was one of the saddest. He weighed 1570 grams, but his lungs weren’t mature enough, which meant he needed to be in an incubator and transferred immediately to the neonatal intensive care unit (NICU).

I finally saw my baby after 24 hours, and it was a truly heart-wrenching sensation because tubes in the incubator surrounded him, along with breathing monitors, and machines beeped constantly.

Emotions controlled my thoughts and among them was jealousy. I felt jealous of whoever had touched him for the first time. I felt powerless. The pain of the deep cut in my belly was minimal compared to the psychological impact of seeing my newborn baby in this situation.

My son’s primary problems were hypoglycemia, respiratory distress syndrome, and feeding problems regarding his prematurity. Although we were in the same hospital, it seemed like there was a universe between us. Despite all the obstacles of being on a different floor however, and the soreness of the C-section, my mind and my heart were always with him.

Finally I moved onto the NICU, after spending ten days on the labour ward. I felt a bit like a fish in a tank but the NICU team were really warm and humble, and they gave me all the emotional support I needed. The rooms were modern, with a friendly and colourful atmosphere, and the unit had an incredible health and safety and hygiene policy.

It was the Christmas holidays. There were lights and Christmas tunes playing everywhere and I couldn’t avoid feeling disappointment at having to stay in hospital. But after some tearful moments I received good news – my son didn’t need oxygen or an incubator any more, and he was transferred from the High Dependency Unit (HDU) to the Special Care Baby Unit (SCBU) – the nursery room.

In a twinkle of the eye I fell in love with the nurses, for their tenderness, and the delicacy they showed in looking after my little prince. They taught me how to feed him via the nasal gastro tube, how to turn on and off the breathing monitors, and the breastfeeding assistant gave me a lots of encouragement to express milk.

I created my own routine. I was always in the nursery room feeding and looking after my prince, trying to make up for the time that I hadn’t been able to be with him.

Joylen being bathed

After three weeks, he was finally discharged. However, just when I thought that I’d seen the back of the hospital I was wrong; he was diagnosed with an inguinal hernia that could only be repaired by surgery. Inconsolable sadness flooded my thoughts, and all my guilty feelings were reborn. But Joylen was in good hands of a specialist surgeon who explained to me the laparoscopic surgery procedures and reassured me that this was a safe procedure, common in premature boys.

Another tearful moment came when I saw the nurse taking my son from my arms to the anaesthetic room. But after two hours of despair waiting for news, I held my boy in my arms again. Besides the soreness he was a little warrior; the operation had been a success.

Cristina's baby, Joylen

It took me weeks to accept my destiny and to understand that nothing was wrong with me. Today Joylen is eight months old (seven months adjusted) and weighs 6,200g, without any health complications at all.

Cristina with Joylen

Many parents find it difficult to accept the surprise of having a premature baby; they feel trapped in a dark space, fearing the worst, condemning themselves irrationally with guilt and feelings of failure. Having a premature baby can be overwhelming, but they are stronger that we can imagine. Albert Einstein and Isaac Newton, both of these scientists were born prematurely and they went on to huge achievements. Nowadays we have all the tools to be successful, but the most important ingredient is faith. A premature baby can be frail, but they are fighters, with an extraordinary survival instinct.

Joylen at home

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

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