Life... Letters to my son...

This should be our month. We both share a birth month, me at the beginning and you right at the very end. This would probably have been the first birthday you had a general awareness, you would probably have made some cute colouring for me at nursery that I would have cherished for years. 

The baby and child section of the cemetery is an interesting place; you can tangibly feel the hopes and dreams mothers had for their child. I only ever see the mothers, we all drive up silently and methodically with our dark sunglasses, understanding and sharing in each other's grief but no words are spoken. 

I remember the first glimmer of you coming home, I was in my hospital accommodation at Great Ormond Street and the nurse excitedly called to inform me that you were breathing on your own and if all went well we could be home soon. I excitedly called your dad and sent him a picture. No one told me at this time that as quickly as things turned for good in the NICU, they could head downhill equally as fast or faster. I went off to pump some more milk for you and boy did I get tons of it.

But within few hours, everything changed, "he may die, septic, ECMO, CICU" we were ushered into the corner room, you know the room in the hospital where they take you when they say, "I'm sorry." You had gone from breathing on your own to maximum support to life support in barely 6 hours. You were too sick for the theatre and right there on the ward at 2 weeks old they hooked you up to the machine that would work as your heart and lungs for the next 10 days. I wept! You were now officially the sickest baby in the hospital, and would require 2 nurses to be in your bed space 24/7. But we overcame and yet another glimmer of hope.

Off the ventilator eventually and by choice. You were a determined little boy and one day, you pulled your breathing tube all the way out - you were such a tiny person that the nurse was in shock. But the doctors gave you a go and there you were almost breathing just room air but at price - again more words " galactosemia" Like lactose intolerance I said, "no this is life threatening" but it was ok for now, you had your special milk and home was still on the horizon.

And almost home we did go, off to Watford General just 15 mins walk to home but barely a few days in and I noticed something was off, you were working too hard on your breathing but the nurse brushed me off as paranoid. The next morning, the call came in, "maximum support, fully ventilated, transfer to a level 3 NICU, not equipped to handle his case." 

Off on our way again, this time to Addenbrookes in Cambridge. It was here that you crashed for the first time, after the third glimmer of home. The ENT was convinced he knew what to do and took you off the ventilator and you crashed."No chest movements, heart rate plummeting towards zero, SATS plummeting towards zero, begin chest compressions with two fingers, page consultant." I just sat at watched, no emotions, you were 2.5 months old. Finally you were reintubated and stable for now and I calmly asked what the next plan was, I had learned to advocate for my child and my tears were of no use, "Transfer back to GOSH, we are not equipped to handle his case."

Another ambulance ride, but this was different, I was fully of hope and expectant but couldn't shake the feeling the this was the last stop."Tracheomalacia, stents, tracheostomy, oxygen." 

The CICU at Great Ormond Street is filled with the most amazing nurses and doctors, Anja, Denise & Rachel, amazing people. "Severe Tracheomalacia and Tracheomegaly, not suitable for stenting, tracheostomy, oxygen dependent, infant life support training, Trachy training, home care nursing."

Another glimmer of home, there you were with your tracheostomy, breathing by yourself albeit supported by your nippy ventilator but once again home was on the horizon. You were successfully sprinting as they called it,started with 10/15 minutes sprints and just like that you were doing half day sprints. "Home assessment, social worker." Social worker - "Ade is a 3 month infant with antenally diagnosed R-CDH and cannot go home at present. He has a complex condition, he will stay at GOSH until a home care package is set up for him. Parents have not had a chance to take their child home." But just as quickly as we did our home assessments, met the social worker and community nurse and planned for home, everything changed.

"An echo has revealed that your son has a PAPVD, inoperable" A what? You're just finding out now ? You were 3.5 months old. A partial anomalous pulmonary venous drainage - part of your heart was not connected properly and I knew. The same consultant, "your son will die, not if, but when, you need to make a plan," "Children's hospice, palliative care, MDT meetings"

"I'm sorry we have run out of options, there is nothing we can do medically" 

As quietly as your came into this world in the early hours of the morning, you quietly left - your head on my chest.

People have said at least he died very young and you didn't get a chance to really bond - really??

Be glad you didn't have to deal with waking up for midnight feedings and sleepless nights - that might be a bit easier than sleepless nights wondering if your child will die as you sleep

You didn't get to the point of paying school fees - nope just funeral expenses ! 

There is no word for a woman who loses her child, it goes against the natural order of things. In my culture, we do not speak of these things, people just move on like nothing ever happened.

The day I got your autopsy results, I almost stepped out in front of a train. I knew I needed help. One of the most helpful comments I got - "I come from a generation and culture where we do not speak of these things, but you live in a country where they do, speak to someone and get some help" thank you! 

Dr Z - thank you so much!! Someone said to me, "Why are you in therapy? Is there something wrong with you?" 

For the many people who supported us from far and near. Thank you! 

This would have been your second birthday! Oh the fun we would have had! I know you're in heaven and I'm ok with that. I've come a very long way and I'm still trudging along. Each day is different and some days are better than others, but we, your dad and I, we have more better days now than bad days. We don't think of you less or miss you any less but the emotions are not as raw. We do sometimes wonder what life would have been like with you around, wonder about what your personality would have have been like but we are not sad anymore. You're in an amazing place! You will always be our first born child, our first son.

Ademide "Cruz" Andrew