Sometimes in life we can be thrown by unpredictable situations. Your present reality, peace and routine become displaced and thrown into a dichotomy of what is verses what was. One hung I’ll say is that we always have a choice in how we handle ourselves in challenging situations that test our faith and stretch our human capabilities and reasoning beyond measure.
Right now, I’m supposed to be in the Caribbean with my daughter. I’m supposed to be her chaperone for filming, I’m supposed to be basking in the sunshine and feeling the gentle sea breeze brush against my face as I listen to my daughter laughing and encouraging me to join her in the swimming pool. I’m supposed to be with her as she enjoys her amazing opportunity and experience.
Instead, my daughter has been unable to travel at the prearranged time, we are waiting for the courts to authorise my mum, her new chaperone, to legally take her to the Caribbean.
All of my children are currently separated between family and friends as loving people step in to support us whilst child #6 in in intensive care fighting for his life.
My son is in a critical condition. He has a type of pneumonia not yet officially diagnosed but treated as though it is a bacterial infection. The worse type of pneumonia a person can get. The doctor used the words “chronic lung disease” which sent a gulp of air down my throat that held its position in a bubble of air until she finished her sentence.
I’ve beaten myself up wondering what I could have done to cause or prevent this from happening. I’ve questioned myself why I hadn’t brought him into the hospital sooner. I mean, we were at the park on Wednesday, apart from being a little grizzly and not his normal chilled self, I didn’t notice anything untoward. How could I not have seen the signs?
On Wednesday evening I noticed that my baby boy appeared to be breathing heavier than normal, I was a little concerned and thought I’d see how he got in the morning. I suppose that’s my biggest regret right now, it’s hindsight and cannot change a thing but I’m struggling with it. Why didn’t I bring him in then, I was concerned but not worried. Why didn’t I just get him checked out?
Thursday morning was a really busy one, getting the other children out to school, child #5 to the childminders and then a meet and greet with a night-time carer due to start this week. It was during the meet and greet that baby boys breathing started to look a bit different. I ended the meeting and called my GP immediately for advise. He was very concerned and actually made me feel stupid for not taking him to A&E immediately. His words were, “well I’m shocked, get him to A&E immediately”. He was right, that is what I should have done, why did I call the GP? At the back of mind it was probably just to get confirmation. I failed to realise what was happening. I called for an ambulance instead of driving him to A&E, it was at that point that his breathing started to rapidly decline.
On Wednesday morning he was fine, and now on Thursday morning he was battling to push through each breath.
The paramedics took a lot longer than I’d expected, about 15 minutes, far too long considering my son has an ambulance directive. I managed to scurry around and pack some essentials before they arrived. They looked over him, did very quick observations and then rushed him into the ambulance. Racing ambulances, flashing blue lights and giving an updated history about child #6 is something I’m very accustomed to now, this has become very much a part of an expected normal. Yet, every time it happens, I’m thrown, displaced and out of sorts.
On arrival, we were met with familiar faces in in the paediatric resuscitation department of A&E. We were also met with the all too familiar conversations about our sons underlining condition and what they think the possible outcome could be. This conversation is ALWAYS NEGATIVE, ALWAYS DIFFICULT and continues to upset and anger me each and every time. I’m not ever interested in them treating Trisomy 13, I want them to treat Jermiah-Lee Moses Marvel Pascall and the symptoms he presents.
The palliative care team were contacted and wanted to speak with us on the phone. I refused. They then decided to come down to see us, and again I refused to converse. It wasn’t because I dislike them personally, or even what they represent. I’ve come to actually have a positive perspective on their input for families. I refused because I chose not to accept that my son was going to die. Had I entertained any level of conversation with them, for me, it indicated that I had a lack of faith and would allow doubt to slowly rear its ugly head in my mind. I just couldn’t do it.
We were presented with three options.
- Take him home, they would support us and make him comfortable and allow nature to take its course.
- Try him on CPAP, a type of ventilation to support his breathing.
- Intubate him, meaning put a tube down towards his lungs through his mouth and use a machine to take over his breathing and ventilate him.
They explained that option number three presented significant risk of cardiac arrest in which case, due to his underlying issues they would not be happy as a team to resuscitate him.
Of course, this infuriated me as it would any other parent. My question was what would they do if he was a typical baby without T13? Would he be treated any differently? The diplomatic response was they have to consider his diagnosis and if it were another baby with underlying issues they’d be having the same conversation. They also said that if a persons heart went into cardiac arrest then it was indicative of serious complications and only a 50% chance they would pull through following intervention.
Again I was ripped to shreds, angry and feeling hopeless. I expressed that I wanted for my son to have full intervention and receive all treatment that any other child would. The fact that they even presented option 1. disgusted me. It may be right for another family but for us, not for me. It wasn’t even contemplated nor considered to be an option in my mind.
We chose option 2 in the hope that it would make a difference with option 3 as a last resort. They attempted CPAP but with child #6 being so incredibly strong even when with severe breathing problems it was unsuccessful. He battled the nurses and doctors as they attempted to put the tight hat on his head tapes around his face with the soft silicon feeling prongs in his nose. He pulled and tugged and kicked and screamed. His strength increased as he fought like a lion devouring its prey. In that moment, I was convinced that my son was so strong that he still had enough fight in him to get through this.
With CPAP failing, we moved onto option 3. Again, we were reminded about the problems and the life-threatening procedure we were consenting to. At this stage, we were out of options and as far as we believe, our son is deserving of every chance to live. His life is worthy, he is worthy.
They suggested we take photos before the procedure. After that point I was an uncontrollable mess. Volumes of tears flowed down my face coupled with blobs of snot and hazy water filled eyes. I just couldn’t think straight.
We were taken out of the room, in hindsight and if it ever happens again I’ll refuse to leave and stay by my sons side throughout. We were taken into a side room where I fell on my knees, I started praying and went to my phone and spoke out loud, healing scripture after healing scripture. I cried, I shouted, my chest hurt with pain and grief.
I then had a moment… “why are you crying?” I screamed out to myself. “Where is your faith? Stop crying, God has got this. God is able, He will heal my son”. At that point, I stood tall, cleaned my face and stood up filled with hope. As soon as I’d done that, the door opened and my son’s consultant walked in with the news that the intubation process was a success and they were ready to take him up to the Paediatric Intensive Care Unit (PICU).
My son has severe lung disease caused by wide spread pneumonia across all quadrants of his lungs. He is fighting daily, hourly, minute by minute. We have had some really difficult moments where his heart rate has plummeted. He is currently producing bile because he hasn’t eaten a full meal in 4 days. He has a catheter to drain his urine because the medication is stopping him from doing so naturally. He hasn’t opened his bowels in 4 days, his face looks as though he has had a botched Botox job and his breathing is still being supported by a ventilator but despite all this, he is still fighting.
My son is strong, he certainly has a will of determination shared by both his mum and dad. He is a blessed child and he certainly revels the power of almighty God to me on a daily basis. He is currently making tiny steps forward, and is once again defying the odds set against him.
Since being in hospital my son has made little but positive progress. The nurses and staff on the ward are amazing. As always my family completely appreciate the commitment, hard work, and care from the team and we value their support.
Please whisper a prayer for him whenever he comes into your mind. We would really appreciate that.
In addition, we are raising awareness for Trisomy 13 and also raising funds for Demelza; Eltham, the hospice that support my family and other families with disabled children.
GoFundMe: Hi, I am supporting this fundraiser, please have a look – ‘Please help Jermiah-Lee raise money for Demelza.