Pretzel's Birth Story

Family picnicking under a tree (Photo credit: State Library of Queensland, Australia)

 

Pretzel’s birth story is one that is complicated and an emotional one for us as a family.  It wasn’t like most birth stories that you will hear so a little back story might be needed to take you through what was the start of a roller-coaster ride that still hasn’t finished yet!

I guess the best place to start would be when I met my beautiful wife.  It was in 1997, when I was 18 years old and I was at a theatre workshop in the centre of Newcastle.  I had been persuaded to go by a friend as it was during the holidays and wasn’t classed as part of the performing arts studies I was taking at the time.  Anyway when we got there I noticed this really good looking woman who I must admit I fell in love with at first sight.  Now I know what you are going to say, one that is so cheesy and two how did I know what love was at 18 years old?  I don’t know what it was but I just knew that she was the one for me.  Unfortunately at the time she was breaking up from a relationship and had a 1 year old child, Jaffa,  so I thought that I had no chance at all but we got on really well and loved talking to each other.  Anyway I managed to get a date with her and we sat for hours and hours talking and things progressed from there until eventually I proposed to her and we got married in 1999. I loved spending time with Jaffa and I couldn’t wait for her to come and visit so we could spend time playing in the park or going for picnics.  My family absolutely adored her and she was immediately accepted as one of  our family.

Then in 2000 Manga was born and I was at the birth and it is one of the best feelings I have ever had. I loved the kids and my wife and I thought life was pretty sweet even though we had money troubles and numerous other things going on I could always look at them and feel content with my lot.  Then in 2003 we had Pretzel but things did not go as smoothly as we had hoped…..

My wife went through a very traumatic labour and we knew things were not quite right. It was her third child and she knew things weren’t happening as they should be.  Pretzel’s heart rate kept dipping low every time there was a contraction to the point it was off the chart.  I kept asking about it but all they did was ‘observe’ every 20 minutes what was happening.  They then decided they would do a foetal blood sample which involves draining some blood from the baby’s head whilst it is still in utero.  This was a very traumatic experience for my wife and I can remember the midwife begging her to have an epidural as the whole time she had only been using Entonox (gas and air).  I had a really bad needle phobia and needed some fresh air so I decided to leave and come back later.  I remember it so well as it was around 3am and I made my way outside the hospital to phone my dad. The whole time I was on the phone I can remember thinking ‘I am coming home either without my wife or without my child’.  This is the one thing that still sticks with me to this day and I will never forget that feeling.  After the call I made my way back to the room where thankfully my wife had managed to get some rest.  Anyway to cut a long labour short Pretzel was born and immediately it was apparent something was wrong.  She was the colour of an aubergine and wasn’t making a sound.  They placed her on my wife’s chest and started to rub her vigorously for about a minute.  Still no response so they took her away to a resuscitation table in the corner of the room.  My wife and I looked at each other and I will never forget the expression that crossed her face.  It said ‘That’s it, game over, she didn’t make it’.  I have never seen that kind of raw emotion in an expression before and it is permanently marked in my memory and even thinking about it now brings tears to my eyes.  I thought my daughter had died.

All of a sudden there was a cry……..

My little fighter had taken that first big step and clawed her way back to us.  The relief was overwhelming and it was the most beautiful sound in the world.  My baby had said I want to be part of that family and fought her way back to us from the brink.  However, there was a price to be paid.  When they checked her over they noticed she had some abnormal facial features and she also had low set, partially rotated ears.  They said they would need her to be checked over just to see if everything was ok. We didn’t think too much of it and were just happy to have her with us.  We were discharged the following day and went home.

We arrived at A&E 2 hours later in an ambulance after Pretzel had a ‘blue episode’.  We had put her down on a changing mat while we had something to eat and noticed her struggling to breathe and she started to turn blue.  we called 999 and were rushed straight to A&E.  They noticed when she was there that she was severely jaundiced, her oxygen saturation was very low and she was hypoglycaemic to a level of almost being comatose. We were told as we had been discharged from maternity we couldn’t go back so we ended up on a children’s ward in a private room.  They went through a battery of metabolic testing and found nothing in particular wrong so after a week or so we were sent back home.  Everything went fine for the next couple of months until at 5 months old we noticed Pretzel making some odd movements so we called our GP.  My wife took our Pretzel to the surgery and was told ‘it could be a cold’ or ‘it is just something she does when she is tired’.  We didn’t accept this and decided to telephone our consultant who had been performing all of the tests at the hospital and once we described the movements he said ‘I want you to bring her in immediately’.  That was the first of many of Pretzel’s Infantile Spasms (a form of epilepsy).

We went through hell in that first year with a barrage of possible syndromes, diseases, conditions and all manner of names thrown at us.  Some with life expectancies of 10 years maximum, some with a lot less years.  We had every different name thrown at us and not one scrap of information that was useful for us.  We had to fight through things for ourselves and piece the bits and bobs we could get from anywhere together to try and understand what our future held.  Eventually the most they could tell us was that she had Epilepsy, Global Developmental Delay, Bilateral Optic Atrophy, Unknown hearing problems and some atrophy of her frontal lobes of her brain.  So clinically she does not have a diagnosis but she is a SWAN (Syndrome Without A Name, a group of people I will talk about in another post).

So we had to adapt our life as a family and accept the fact that we had a little girl who would need heaps of attention, care and a lot of extra love and patience from all of us. We have had many turbulent times through the 9 years that Pretzel has been with us (including almost losing her 3 times) and we have had to fight for everything every step of the way but this is offset by a few things that people may not expect.  I have had many people say to me ‘I don’t know how you cope’ or ‘It must be awful having to deal with everything that you have to do’ and I always think to myself…..

I never thought I would have her with me as part of my wonderful family!

This is the thought that makes everything worthwhile. That and the big smiles and laughs that make the world a nicer place to be.

I know that Pretzel has given me more than anyone can appreciate.  I am a better person for having her with me.  I am more patient than I ever was in dealing with her tantrums, behaviours and lack of understanding.  I get to appreciate things more than other parents do because every little tiny thing she does is a major achievement.  All of the things that other parents take for granted like their child talking, walking, smiling, asking for things, saying ‘I love you Mammy/Daddy’,  all these things may never come from Pretzel but the small things she does do are all the more celebrated and praised. She is 9 years old but her mental capacity is 2 years old and she has taught me more than anybody else I have ever encountered.  I love her so much and all of my daughters make me a proud man and I know they will be fine examples of young women when they grow up because they have had every ounce of love and support from us in every way and they always will have.  So now as I write this our Jaffa is about to start 6th form at school,  Manga is about to start secondary school in September and our Pretzel is hitting targets with her school, making progress in other areas and is still fighting to be as independent as she can be.

So there you have it.  A short introduction to our little family and how we started out on the road which we call our special journey.  There will be many more tales to tell and many more achievements to share so please do take a look at my blog and subscribe to keep updated with what is going on.

Stay safe and keep smiling folks!