Those 5 hours felt like a lifetime, there were so many thoughts running through my mind. Is he going to make it?

Shocked, confused, overwhelmed and sick. These are a few of the range of emotions that can help to express how I felt when I received the news that there appeared to be a complication with my unborn child at 35 weeks of pregnancy. Due to a pre-existing medical condition I was recalled to have a extra scan. When compared to the other two scans, this one appeared to take forever. My husband and I were rather anxious as we saw scans as something of a formality and the thought of something being wrong did not even begin to enter our thoughts. The sonographer explained that she could see an abnormality in the baby's brain but was unsure as to what it was. She informed us that she would have to seek the thoughts and opinions of a consultant but that unfortunately they had all gone home for the night.

At first it didn't really sink in and I didn't really take it seriously. The following day I was called to come back for another scan where I was told that the baby appeared to have a brain aneurysm. Despite nodding in response, I had no idea what that meant and was told that there would be no need for any immediate concern as I had not experienced any complications so far. My husband who was seated next to me had managed to search for the meaning and his facial expression changed to a more concerned look. I was advised that I would be closely monitored for the rest of my pregnancy. The following day I was called by UCLH (University College London Hospitals) who had received my file and requested that I come in immediately. I was met by a large team of doctors, nurses, paediatricians, and other medical professionals, who informed me that they had received my file from my local hospital and that they would be preceding over the case. They then proceeded to lead me into another room where I had yet another scan.

My unborn child was diagnosed with Vein of Galen Malformation (VGM). It was explained to me that I would have a planned C section within 6 days, this was at least a month before my due date. I protested that I wished to proceed with a natural labour, however, they told me it would be too dangerous for the baby and result in serious health implications. They explained that the baby might display signs of cardiac arrest upon arrival and that a natural labour might be too much work for the baby, so I stopped insisting and agreed to the C section. I was crushed, it felt like my heart had been ripped out, although I put on a brave face, I was absolutely devastated. I now dreaded the task I had ahead of me, to deliver this news to my husband and the rest of our family.

Our parents and siblings were shocked, although they tried to conceal it for my sake, and tried to stay as positive as they could. I received lots of encouragement and inspirational words. The fact that VGM was a virtually unknown to us did not help. My husband and I decided that at this stage we wouldn't inform all our family and friends, as we were still trying to process things for ourselves.

Everything happened so quickly like a whirlwind and it was hard to fully comprehend what was happening. My thoughts and feelings had to be put aside, it was now 'The Day'. It is rather amusing as the week before I had a baby shower, dreading the day I'd be in labour, yet here I was being prepared for a C section. My husband and I kept each other in high spirits, our parents met us at the hospital and waited patiently in the waiting area.

I was prepped and on April 19th, 2016, my beautiful baby boy was born. I was introduced to him briefly because he was rushed off for checks and scans with the baby doctor's. I experienced happiness and heartbreak both at the same time, it was such a bittersweet moment, tears began to fall down my face. I was thankful that my baby boy was finally here but the thought of what was to come was something I would rather put to the back of my mind.

I was told all was well so far with the baby, we hadn't named him yet, so we referred to him as 'baby'. My husband was going back and forth from room to room, checking on me and then on the baby. All I kept saying was 'What does he look like?' because for the life of me I could not remember, I wanted to spend more time with him.

I spent about a maximum of 30 more minutes with my baby that day, and my eldest son got to FINALLY, those were his exact words, meet his little brother, he was so in love with his brother and kept telling the nurses 'my little brother is so cute, can I take him home?'  Not long after that he was taken to Great Ormond Street Hospital (GOSH) with his Dad whilst I stayed at the hospital. He had been given a 50% chance of living, so I didn't know whether I would see my baby boy again. All I could do was hope and pray.

As I lay in the hospital bed trying to take in and make sense of all that happened that day, little did I know the drama that was occurring down the corridor. My husband, my new-born son, and the team transporting them were stuck in the lift, for over one hour. The main concern was making sure the baby had enough oxygen. Luckily for us there was a spare oxygen tank that had to accompany the team at all times. The fire brigade was called and came to the rescue. Thankfully there was no emergency.

The next day I managed to get discharged just in time to kiss my boy as he was taken away for his 5-hour surgery, bearing in mind I had just had a C section. The procedure that was due to be carried out on our son is known as an Embolisation. The next 5 hours were the most excruciating hours I have ever faced in my life. I had to watch my son being wheeled away by people I have never met in my life and I had to entrust that he was in the best possible hands. Those 5 hours felt like a lifetime, there were so many thoughts running through my mind. Is he going to make it? Will he have brain damage? Are they experimenting on him? (Yes, I really did think that lol), What time is it? Is he out yet? I was trying really hard to keep things together on the outside, but inside I was broken.

The call finally came through, approximately 6 hours later, the surgery had gone well, he was in the Neonatal Intensive Care Unit (NICU). The first time we saw him after surgery was surreal, he had so many wires on his head and chest, tubes in his nose and mouth, he was wired up to so many monitors, there was just too much going on. I thanked God that he had made it through such a traumatic experience. I thanked all the nurses and doctors, although we were not out the woods, yet I was thankful that I was just able to see him again.

At first, I found the monitors to be frightening, every time one went off my heart would jump. I would instantly start thinking 'what now? what's the problem?' I would always ask the nurses what was going on, what each machine was for? They were always so nice and answered all my questions and told me not to hesitate to ask them anymore. I began to understand things overtime, after some time the machines were not that scary anymore and became a source of information that let me know what was happening.

For several days he was kept under an induced coma, to assist in controlling any swelling to the brain. His eyelids were now swollen as he was kept asleep he was unable to blink, so fake tears were applied to help with the swelling. He was then weaned off the medicines that were keeping him induced and woke up in his own time. The first time he opened his eyes and looked at me was one of the most glorious moments I have ever experienced.  We were at GOSH for just under two weeks before being relocated to our local hospital, The Royal London. This was the first time around. We were able to take him home after two weeks, but the journey was far from over. He had to endure this procedure a further two times throughout the duration of the year. 

I had never ever imagined that my family and I would go through what we went through. I was unprepared to have a 'sick' child. I wasn't ready for him to have one procedure on his brain, let alone three. When I used to see the Great Ormond Street Hospital advert on TV when I was growing up, I had no idea that it would one day become a part of my story.

To all of the parents/guardians whose precious children have unfortunately lost their battle and are no longer here, we support you and know that the time you spent with them has taught you a lot.  Your precious will forever live on through you and in your heart.

I have a new-found respect for all parents/guardians, especially those who must provide care for a sick child daily. I encourage you to keep on striving and to ensure that you hug them, every day for each moment with them is precious.

My son is growing very well now and no longer needs any more procedures. He is just a young, healthy, happy boy, in fact, he will be 2 years old this month. When my son was sick and weak I had to be strong for him, and when I was weak his strength gave me courage. He is so precious, and I am so grateful for his life.

Guardians of the precious- Here to support you, so you may support your precious.