It’s 2005, I’m 19 and 5 months pregnant with my firstborn son. This pregnancy was a surprise (well the surprise was that the pill doesn’t always work, who knew?!) but my boyfriend and I were dealing with it, we were scared yes but we could handle this!
It was my 20 week scan, we were so excited about finding out the sex. I was convinced it was a boy, mum in law thought girl as I was carrying so neatly. The sonographer took the measurements she needed to take, working her way around this little wriggly worm on the screen. She did the femurs, head circumference, crown to rump. She then explained that she would be looking at the chest next, checking the organs; heart, lungs etc. I hadn’t felt nervous at all, never once in my pregnancy had I worried about the possibility of anything going wrong. I was younger and maybe a bit naive to potential problems. It was before the days of access to google at your fingertips (I had a brick Nokia with the slowest internet ever that cost me about a tenner to even log on to) so you could say ignorance was bliss. My second pregnancy could not have been more different, I actually had to put myself on a self-imposed Google ban as I was convincing myself I had every pregnancy issue going.
I knew something was wrong when she suddenly stopped talking, she looked at the screen and then looked at me. She excused herself and returned with a man, I’m assuming he was some sort of consultant. To be honest, everything after this moment was a blur right up until I held my son in my arms. In hindsight, I’m not sure I had a flipping clue what was happening or being said half the time.
He was diagnosed with a cystic congenital adenomatoid malformation (ccam) or congenital pulmonary airway malformation as it is known today. It is a rare condition affecting only 1-25,000 babies. Where normal lung tissue should form, instead there are cysts. The cysts, depending on their size can affect the position of the heart and push down on the diaphragm. I was offered a medical termination at almost 6 months, which we didn’t even consider. I just knew he was meant to be on this earth, my baby boy fought one of his biggest battles before he even entered the world.
On December 5th 2005 my little bundle of blue came kicking and screaming into our life, at 9lb 2 he was certainly well equipped to beat this condition. He continued to thrive and despite numerous admissions into hospital he was becoming a bright, kind and adventurous little boy. Two days after his 2nd birthday he had a lobectomy to remove the lower lobe of his left lung. He was under the care of the Royal Brompton hospital who were and are simply amazing in everything they do. Fast forward 8 years and you would honestly never know anything had ever been wrong, the only telltale sign being his “shark bite” scar along his shoulder blade.
Now, we were assured when I fell pregnant with I that there was no higher risk of any complications and she proved that by arriving pretty drama free in June 2015. Besides, how unlucky would one have to be to give birth to 2 kids, 10 years apart and they both wanna give me heart failure with life threatening illnesses….nah, not gonna happen! Despite this, something still niggled at me. I found myself becoming superstitious, I seemed to have this one magpie following me everywhere so I convinced myself it was just waiting for something bad to happen. Now obviously the magpie theory was nonsense but after everything it kind of helped me make sense of it all.
That something bad happened in November, after 10 days of suspected bronchiolitis my little girl was showing no signs if improvement, she was refusing feeds, sleeping lots then not sleeping at all, she was just downright miserable. We were admitted into hospital so she could be tube fed whilst they did further investigations. Whilst in hospital (the amazing St. Georges, Tooting) she developed a terrible stridor, the sound of her hoarse, dry and raspy voice with every breath haunts me to this day. The amount of energy it must’ve taken her tiny little body to just breathe in and out breaks my heart. Steroids and nebulisers eased the discomfort but it wasn’t until we saw an ENT consultant (my hero) that we knew what was really wrong. I was alone when I found out, the other half was on the school run with our son. It didn’t occur to me I might need him there, that was until the sting of hot tears on my cheeks and sheer panic took over. My little girl, a tiny 4 months had a mass in her airways. It was seriously compromising her breathing and they were rushing her straight to emergency theatre. What? How? Hold on, this can’t be happening…not again. It’s hard enough watching one child drift under the spell of anaesthetic and seeing them wheeled away, a tiny body drowned in wires and tape, but two?
Panic, fear,despair, the feeling of its not fair, why us…all over again.
After the longest 2 hours of my life we were taken to recovery to see our little bean. The surgeon explained that the mass was a parapharangeal abscess, an infection in the deep nodes of her neck. They had drained almost 40ml of pus from it. Again, it was very rare especially in babies her age. They wanted to do further investigation once she was well to see why she could not fight this infection and it developed into something so serious. She spent 4 days intubated in intensive care whilst her airways recovered but once woken up her strength and determination amazed me, the babe was smiling after 24 hours after seeing none for almost a month then we were home 3 days later.
Now, 4 months later I can reflect on what we went through. I can appreciate that yes, call it unlucky that something like this happened twice but as cliche as it sounds, what doesn’t kill you makes you stronger. It’s taken a while to get back to normal, every little cough or cold we worry if she will fight it. But again, she continues to amaze us. As does her big brother. What a blessing, our two little heroes.