Five years ago September 3rd at 6:16am I gave birth to a beautiful little girl who I called Faith. I have to admit I don’t really follow my religion so she wasn’t named that for any religious belief, I called her Faith because I was always going to believe in her.
Good Friday 2007 I found out that I was pregnant with Faith when I went to an ultra sound appointment because I had possible polycystic ovaries, my periods were all over the place (or so I thought), I was bleeding really erratically – you could imagine my surprise when the screen was turned to me to see a little life of 15 weeks infront of my eyes!
I was taken straight away to a side room after having the ultrasound and receiving my picture where I was informed that this little baby inside me had a life threatening condition, even as small as 15 weeks they were able to tell me about her Congenital Diaphragmatic Hernia. My mind warped, I wasn’t expecting to be told that I was pregnant never mind the fact that this child had a life threatening condition. The midwife went on to tell me all about CDH, however no matter how long she kept talking I was taking very little in – I was just in absolute amazement at the little picture that I was staring at! I managed to remember that there was a 70% chance that the baby would have a chance at life and I had to make my decision as quickly as possible if I wanted to keep her.
I left the hospital and went to my parents to pick up Theo then went over to call my cousin – You’ve no idea how much I appreciated the fact that she got finished work early on a Friday. We took the kids out to a local forest and i told her everything I remembered. I actually think that she was more shocked than I was, I’d already made my decision at that point of time that I was going to be keeping the baby, she’d made it those 15 weeks – I couldn’t not give her a chance at life!!
What CDH means is that she had a hernia in her diaphragm on the left side which was allowing her organs from below raise up into her chest causing troubles for her upper organs to grow and develop naturally. Her right lung had grown but not to capacity that it should have been, her left lung had stopped growing and her heart had been pushed over to the right side of her chest, consequently it hadn’t developed as much as it should have either but it was still beating strongly! If you’d like to know more about CDH please look here http://www.cdhuk.co.uk/
The following few months were like the biggest roller coaster that I’d ever been on. Trips to Dumfries to Glasgow, constant hospital monitoring appointments, constant Dumfries hospital appointments, diabetes going higher and lower, developing pubic symphysis, the stress of not knowing of what the end result was going to be among all Theo’s appointments with different health professionals, social workers, setting up respite for to be able to give birth in Glasgow as no one was able to take on his care in the family, him going through his self harming stage, trying to make sure that Ali understood everything that could possibly happen.
My care plan was put together, I was going to give birth in Yorkhill Hospital for Sick Kids in Glasgow, it was going to be a natural birth as that’s best for babies with CDH, She’d then be taken up to the ward and I’d be residing in the Ronald McDonalds House across the road from the hospital.
Well when she decided that her wait to show face was over she kept everything true to form. She arrived at 36 weeks, my waters broke at stupid o’clock in the morning and I was too far dilated to get to Glasgow. On arrival to the birthing suite I took a funny turn at the exact same time as Madam – I completely passed out, nursing staff struggling to bring me back round, they lost all Faith’s stats at the same time. When I woke up I was surrounded by a team of 9 midwifes and 3 doctors.
Needless to say I wasn’t travelling to the hospital that she was supposed to be born in, this terrified me as I knew that all the staff and care equipment that she was depending on having immediately at birth was 100 miles away! I was told that I was having a C-Section just in case I developed any more problems as I had just had.
Arriving into the theater where she was to be born I was introduced to the surgeon who was going to be carrying out the procedure. .
“Hello there Miss Magee, My name is Dr *We’ll leave this bit blank*, I’m going to be carrying out the operation, have you chosen a name for your daughter” then he paused “Oh I mean baby, sorry do you know the sex?”
Well was a bit late if I didn’t wasn’t it!!
“Yes Dr *WLTBB*, you’ll be pleased to know and her name is Faith”
“A beautiful name Miss Magee, I really recognize your face should I?”
“Well does the name Theorathamos P S mean anything to you?”
“Ah, I see Miss Magee, it really is lovely to see you again, I’ll go get organised while you get your epidural”. He genuinely couldn’t get away any sooner than he did on finding out how he recognized me. Three years previously he told me my son had ADHD, went on to ask me if I would like to have Ritalin after spending no longer than 10 minutes in his company. After the complaint was lodged he was taken away from the child development centre and well – apparently he was now dealing with babies births – Great!
“It is lovely to see you Doctor, in a twisted bout of fate I suppose you’re the one person that can genuinely tell me that they’ll make no mistakes and do their best to keep her alive”
Yup the look on his face was priceless but I was terrified and full of dia-morphine and lets be fair – anyone that knows me knows that I’m not backwards at coming forwards!
As the whole procedure was being carried out I lay and spoke to a male nurse the entire time about my Youth Work and Autism. He was a lovely guy, I must point out now it wasn’t an intentional conversation for this Doctor – the guy was really interested about my experiences with it because his nephew also was under the Autism spectrum.
Mid conversation all of a sudden he said “6:15, sorry no 6:16!” I looked at him bewildered “Faith’s time of birth.”
I turned to look in the opposite direction to see the surgeon rush out of the room with her, I was prepared for this, I was told that was the way that it was going to happen. The nursing staff respectfully let me just sit quiet and dwell on my nervousness, I didn’t want to speak to anyone until i knew that she’d at least survived the birth. about 15 minutes later the doctor came back to me and let me know that she’d successfully been put onto the ventilator and as soon as I’d recovered from the epidural they’d take me through to see her.
My mother arrived with my two cousins Tammy and Erica to support me through going to see her and spend time with me before I was going to be setting off for Glasgow to be with her, as soon as I’d seen her she was leaving pretty much straight away so that the specialists could care for her and arrange her operation to fix the hernia.
She was the most precious, beautiful little girl I’d ever set eyes on, of course i’m totally biased tho lol. I was a bit freaked out by all the wires and ventilator but i knew it was essential, I couldn’t hold her as she was too fragile but I didn’t mind because i knew that in a few hours I was going to be by her bedside able to talk to her and stroke her hand.
Or so I thought …
At lunch time I’d been told that she’d arrived there safely and once all my post operation checks had been sorted out i’d be supplied with an ambulance to take me to Glasgow. I sat up to eat my lunch and all of a sudden my bed was soaked in blood, over the hours to come I’d developed pains in my shoulders and my ribs and 36 hours later I was having surgery because I’d began bleeding internally from the damned polycystic ovary!! I spent 4 days trying to get over two operations, fretting about Faith’s tightrope of a lifeline she had and on the Friday when I got told that she was going to the operating theater to have the hernia fixed I decided that I was going to move hell and high water to get there to be with her.
Against the doctors advice I got to Glasgow by 5:30pm for her getting back to the ward and settled in.
I went up to the ward with one of the nurses from the Queen Mum’s. When I got into the room that Faith was in I couldn’t help myself but break down. That little girl was laid out on her bed looking as if she was taking fits (it was just the type of ventilator she was on tho!). “What the hell have i done to her” I asked Carl Davis. “Given her the chance to live” he replied.
He went on to explain about the ECMO machine and how Faith had to go onto it to give her lungs a chance to develop. They wanted to put a fluid into her lungs to try and let them grow and develop as they were very condensed by her stomach, liver and bowel in her chest cavity.
I went back over to the Queen Mum’s and waited on them putting her onto ECMO and the doctors coming over to talk to me about everything since i had such a lot to take in. Tammy, Erica and Aunt June came up to make sure I was alright following a call from the hospital asking them to come and stay the night.
Erica stayed the weekend with me and supported me with everything. I stayed in the queen mothers for 5 days then finally got discharged. I went to stay in Ronald McDonalds, the parent accomodation across the way.
Daily I’d spend hours with Faith, her ups and downs with her health was just like that rollercoaster i mentioned earlier. The fluids they were using to try and expand her lungs wasn’t working efficiently so they decided to try her off the ECMO machine and going onto Kidney Dialysis.
All the time she was on ECMO she maybe looked puffy but she always looked a picture of health. It’s so deluding how healthy they can look when it’s the inside that’s not working. I got told she had less than a 50% chance to come off ECMO because of the capacity of her heart but she turned that around n was able to come off … again … less than 24 hours later … fair enough she went back onto it but she still got off it!!
The second time that she was back on it they were talkin about her future plans … they wanted to move her into another ward … PICU where they could give her 24 hour kidney dialysis instead of 12 hour kidney dialysis. This was scary but such a vital thing to happen.
She moved through there and within a few days they wanted to try taking her off her kidney dialysis again, they tried twice on the Friday morning and she almost slipped away both times, however they topped up her fluids and gave her a dose of steroids and she was fighting again. Third time lucky!!
Kidney dialysis was working fine … she was running at negative levels for the first time in her life (which amazed everyone as she always liked to be a little positive!). Then she caught an infection … blood cultures showed that she was sensitive to a couple of the medicines that they’d been giving her. They started giving her antibiotics and fight against the infection.
In the mean time she was struggling to maintain a temprature, her bowels hadn’t moved in several days and on Tuesday 30th October she took a cardiac arrest in the morning. The doctors asked me to attend a meeting in the afternoon to discuss the plans for Faith and they asked me if they could switch her machines off as it was getting harder and harder for her to fight and they’d nothing more that they were able to do to try and help her, they’d tried other specialists all around the world to see if there was something that could possibly be a solution but everything had been done. As much as I was devastated that I had to make this decision I knew that without all the machinery she’d not be there. If I was to tell them that I wasn’t going to switch off the machines I’d be prolonging her pain and making her worse. They had my consent.
Tammy and my mother came up the road and was there when Faith passed over. My first longed for cuddle was my last one, but at least she got to pass in my arms and feel my warmth and love toward her. Tammy sang to her, I think that was to stop her crying but she did so well and it stopped all of us from crying. Faith fought on for a very surprising length of time after all the machines were switched off.
She did herself proud!
After she passed I got to bath her and get her dressed into her clothes, she looked so beautiful, so peaceful, there was no cables or wires coming from her little body. She ended up with glitter on her … I’ve no idea where it came from but I certainly feel it’s just like angel dust. My little angel was taken away at 6:15pm I left her at 9:45pm. I spent my time with her giving her the cuddles she deserved so that she knew that she was loved.
Even tho Faith was only here for a short time, she’s had a massive impact on many other peoples lives. She certainly changed me for the better!!