Author: April Birch

So, when Lauren was born, she was kind of curved, to the right. I think she sat like that in me, as she was breech, he head at the top near my lungs, so were her feet (fortunately she came out looking ‘normal’ and not with her feet still near her head!!), so she will have been curved round all my insides.

We thought she would just straighten up as time went on, but then after all our news I became a little bit anxious. After meeting the CDC staff we were referred to orthopaedics, they sent us for X-rays and the results were that she also had a slightly dislocated hip. Sigh!! For real???!?!?!?!?! (insert scream here !)

So we were sent home with this…

You can’t quite see the little boots that are attached, they hooked up to the straps across her body and stopped her from straightening her leg. She had about 2 months with this thin on night and day (may have been longer, I forget now!). It helped set her hip back in place and her final x-rays showed all was well.

I cried when we first put that on. I wanted a normal life, with no ridiculous problems and my baby to not have to put up with so much crap. But, alas I was not to have that.

The good news was it didn’t bother her. It just bothered me. Maybe Jonnie (you’d have to ask him!) And second good news was that it worked. This problem was solved! Shout out for Mr Tang!

A little over 5 years ago we were given Lauren’s MRI results. These words were said but had no meaning to us at the time; Pachygyria, Schizencephaly, Posterior Fossa Cyst– which is a Dandy-Walker Variant. Not the syndrome in it’s fullest; Agenesis of the Corpus Callosum, and at least two areas of the brain that were under developed. The last being the hardest to remember which bits for some reason.
I remember feeling completely numb when the Doctor read those results to us. Until later that day I dropped Jonathan back at work and then just broke down. My world was quite literally turned upside down. She had already been diagnosed and we were living with Cystic Fibrosis. Life seemed it’s most unfair that day.

The Doctor told us not to look these things up in the internet, but months later when no one would talk to us properly about them, I did. If you read some of the literature then you’ll understand why I started to feel like Lauren’s future was incredibly bleak.

It took time and processing and some concious decisions to decide that as a parent I would focus on Lauren. I would somewhat forget about these labels and push Lauren to do things and achieve things, until she decided what her limits would be. Not every day was like this and I could never describe how low I felt some days. But overall I decided I would never let Lauren feel like she was a disappointment at all, not even a tiny bit. We would expose her to things any child would be, we would do all the things normal families did and experience life as full as possible. None of this was easy. Amongst many tears, Doctors appointments that we had to attend, and other people’s attitudes and perception of things, I literally found it hard to get up and try to psyche myself up to go out and get on with daily life some days. Lauren is the very reason I did those things.

If I had limited Lauren, because technically she wouldn’t perhaps walk, she might have seizures and/or need a shunt in her head, she has CF and that is a pretty scary world in itself; if I had limited her because of these things, Lauren would not be the child she is. She LOVES to socialise, be outside, do fun things like swimming and riding her bike, being around her family. She is very literally the MOST happy person I have ever come into contact with. There is no one I know that finds Joy is such small and simple things and then spreads that Joy with a smile and laugh and with love that I just can’t even comprehend. She comes with no judgements, she loves everyone. She says hello to everyone who she sees, in the hope that they’ll smile back and say hello. She is amazing. I could go on forever about her. 

One of the things I’ve learnt most with having Lauren is that you just keep going. When you have to go to 49 appointments in one year for her, when she’s still not walking with her frame by herself and each day you have to practise, knowing you’ll regret not giving her the best if you don’t, when you never once, not a single day of her life get to not give her medicines, when you have to put ugly orthotic shoes on her instead of beautiful pink girly ones that she just loves, and when you feel fear to your very core that out and about she may pick a bug up and end up in hospital, (but if you don’t take her out you’re denying her and others a happiness found no where else), well, it’s those moments on a daily basis that I have to remind myself that you just keep going.

We are not in control of everything, I would love to be, but I am not.

If I lived by what Lauren’s limitations seem to suggest we should, life would be so miserable. More miserable than I have felt when she’s ill and throwing up, and coughing through the night, or hooked up to IV’s, or when she was laid in an incubator. It would be so much more miserable, because that would mean I would miss her and her Joy that she spreads, and nothing is worth that.

I don’t know what Lauren’s future holds health wise. I can’t know. Her disabilities should mean that she is one of the more ill CF patients. Yet thankfully she is being blessed to stay well at present and seems to keep on thriving. But no matter what happens, no matter how haunting life seems with things looming over us we just have to keep going, spread a bit of Lauren joy and hope for the best. There is always a light at the end of the tunnel, even if it just around a corner. Keep going!!

Being told by Doctors that they didn’t know if Lauren would see, or the extent of her vision was really painful. In a very different way to Cystic Fibrosis. We were already living with CF and getting the hang of her meds and routines. It wasn’t wonderful but we got on with it. No matter my feeling, I got on with it because that’s what Lauren needed. And that was my job.

How do I do this with visual problems. Well, I soon got on with it and bought some bright bold contrasted books and would do some eye training exercises. But if there were going to be issues, I genuinely knew I could do nothing about it. It was hard and my Faith was being tried. We decided that we would Fast and Pray and ask family to do the same, and at the end of the month of May we would ask for Lauren to have a blessing from the Bishop and we would go from there. Our plea was simple, that Lauren would see, that she would be able to enjoy the beauties of this world; all the while knowing what would be would be. If there was reason for her to be blind or severly visually impaired we knew that was a challenge we would have to deal with. But out of all the problems before us, this was one that I so desperately did not want to have to live with.

Lauren was given a blessing, and in the blessing she was told that according to the faith of those around her she would receive miracles in her life. She wasn’t told she would see. That was a little shock for me. But I knew she couldsee if we just believed. From then on we carried on life as if she could see. Her eyes went from strength to strength.

She has visual problems. She has Occular Motor Apraxia. She is registered partially sighted due to her condition. But my little Lauren does not miss a trick! She goes incredibly cutely bogeyed when she’s tired, which makes me love her more. But Lauren see’s colours and people and nature and loves it all.

Some things seem to be sent to try our faith because we have to endure them, others seem to be test whether we still believe regardless of our problems. I’m very thankful to a God I believe is there and for the miracles I have witnessed since Lauren came into our lives. Some too precious to utter to others, but real none the less. Our family has been blessed by having Lauren with us and we are trying to keep positive and have a happy outlook on life. I mean-who couldn’t with this smile in our lives daily!!??!! xxx

It was definitely hard to get my head and emotions around everything, but amongst all those things going on here are a few picture of why I managed to get out of bed and survive each day, a reminder to me that love can conquer all…

We love having her with us and did and still do try to find things to take our minds off things and just enjoy everything that she is and all she brings to our family. The Birch 3  🙂

Whilst we were in hospital with Lauren, I remember one day turning to Jonathan and asking him did he think there was something wrong with her eyes…he answered (this is Jonathan’s positive answer to everything), no they’re fine. I brushed off my feelings. However, I had noticed that they were a little ‘off’, couldn’t quite figure out what I thought with her being so little and poorly.

When we were back for the second time in Jimmy’s Dr Tim Lee came to talk to us and said the nurses were a little concerned that when they walk in the room she doesn’t seem to be following them, so wondered what we thought about having an eye test whilst we were at the hospital. I responded with “that would be good, I’ve noticed her eyes aren’t quite right for a couple of weeks now but didn’t really know who to talk to”. He arranged an ophthalmology appointment and at nearly 8 weeks old now, we were told our baby ” obviously isn’t seeing, but they eye looks fine so it would be worth looking at her brain”. Thanks for that! I have come to appreciate Mr Vernon Long’s brute honesty, but I was fairly fragile at this point so along with an invasive exam that left her screaming, me scarred, and him crushing my soul a little more, this Friday was not a good one.

I look back and can see Dr Lee’s face when he came back to talk to me and his face said everything, he tried to be positive but he knew as I did that something was up. We got to go home again this day. That was a mixture of nice and an overwhelming feeling.

The MRI was March 24th and I fed her and rocked her to sleep and they did as much of an exam as they could. I obviously couldn’t go in with her, story of our lives thus far it seemed!

We got the results approximately one month later. We were at a routine CF appointment and a GP Dr was seeing us for all the CF stuff but he then said, I just need to go and get Dr Brownlee. Dr Brownlee came back with a piece of paper and read us Lauren’s MRI results. I had no freakin clue what any of it meant. He explained as best he could, but said we would now be referred to Genetics and Neurologists and the Child Development Centre (CDC) at Airedale.

I was completely numb. Even if I had wanted to cry in that room I don’t think I could have. I knew there were some serious issues but went into lock down emotionally. 9 weeks ago I had no idea what complications could possibly come along and now had all this new information we were meant to get our heads around!

No answers came quickly, and I paraphrase a couple of years here because it took that long, but basically they took our DNA and Lauren’s and did a lot of tests. Lauren had a misprint in one of her gene’s called the TUBA1A gene. Neither of us had this misprint and so it was new in her and it’s part of the genes that form the brain. They hadn’t seen this misprint before but others that had similar misprints had similar issues. Her little brain had many a problems!

Once we met with the genetics guys they went through the different bits that were different and told us what they meant as much as possible. Lauren would have learning disabilities. She would probably have physical disabilities. Her sight problems were also down to the problems within her brain. She has a small chance of a cyst at the back of her head causing issues and her needing a shunt put in. This is a small chance and one I tend not to allow myself to think about. I looked all of the issues up on my own, and the more I read, the more incredibly grateful I am that Lauren doesn’t suffer with some of the things posing a risk. She doesn’t have epileptic fits. And I pray to high heaven it stays that way. She can coordinate her hands between each other and technically the two sides of her brain shouldn’t be able to communicate with each other. I have a very educated opinion (things they’ve said, looks they’ve given) that the Doctors expected more of a in abled bodied, vegetative state of a person who wouldn’t be independent in many things at all, if any.  My Lauren was put on earth to change people’s hearts though and to do this she would need to be able to communicate her love. She’s determined to be her own person and do the things she loves to do. She knows herself and her likes and dislikes. She can think, something that should be seriously impaired. Lauren can see. She can see grains of rice, she can see flowers, pictures, people and places. She shouldn’t technically be able to see. But I think that one is down to a pure miracle, a gift from beyond my capabilities. (I’m trying not to inject religious views here at all, but I see miracles in her life, that no Doctor gave, I certainly didn’t, but I feel I know who did. There will be a few spiritual inputs because this is about who we are and our faith entwines with what we believe so there will have to be some, because my little Lauren came straight from Heaven and I feel so much peace knowing that).

So decision time for me….

I was driving Lauren home from that appointment with Dr Brownlee giving us the results, having just dropped Jonathan back at work and I broke down. Lauren was in the passenger seat next to me and I was trying not to cry out loud because I didn’t want her to hear me. Well, she knew something was wrong and kept lifting her head up and ‘looking’ over in my direction. It hurt so much for so many reasons, but at that moment, with her being so concerned for me I decided something that I try to practise every day. I decided I would not let Lauren ever feel like she was a disappointment to me ever. Because that wasn’t why I was upset. I loved her, all of her and nothing changed that. So I decided that we would fight, we would try, we would persevere, we would achieve, and I would not let her feel disappointment from me, either by my face, or my feelings. She would only know love. She would be surrounded by it. I would deal with my stuff separate to how we would deal with her issues together.

I don’t know how well I’m achieving this but I try every day still because that’s what she deserves.

The bumps in the road didn’t stop, Lauren has one leg shorter than the other so only gets to wear piedro boots from orthotics, she has psoriasis in her head, and since she was 18 months old she has pulled her hair out to the point of balding herself.  She is a complicated little girl!!

I have just had to look at things with an “are you actually kidding…..could you give us a freaking break now” kind of attitude and just be grateful Lauren is who she is.

Day in, day out we made our way to the hospital to see Lauren. We were only allowed to stay 2 nights in the Hospital in a parents room near Lauren. Then it was travelling every day. Jonathan went back to work pretty quick because it made sense not to use up holidays, so when paternity leave was up he went back, and visited before, lunch time and came straight after. He only worked a ten minute walk away so it was nice to have him with us. But getting up so early to go in with him didn’t work for my exhausted post op, post baby body. So I got lifts in (wasn’t allowed to drive after c-section for 6 weeks just to make things super fun!!) and came home with Jonathan. The chairs in the room were no better than waiting room chairs you find in most hospital waiting areas. They were uncomfortable and I spent hours on them. But the silver lining here, although it did frustrate me slightly, was that only parents and grand parents were allowed in the surgical newborns ward. So I got a lot of time just me and my new baby. Sure, I felt like she had been taken away from me, even though I knew she needed to be in hospital, but having these hours in the day holding her every second I could was the only time during these first 5 weeks where I felt calm and peaceful.

I remember leaving that hospital vividly each night, and before I was out of the Peter Congden wing, I was crying and couldn’t control it. I knew that Lauren was screaming through the nights. I heard a Sister in the ward talking to a nurse and trying to be quiet one day. It went something like this: Nurse-“she seems really content”, Sister-“yeah, she always is during the day when mum is here, but as soon as she goes she is really unsettled”. This made me smile, I turned to them to see if they were looking my way, they were, and I grinned at them. A knowing grin came back from a Sister who saw the gratefulness in me that my baby knew me and loved me. But I cried even more that night when leaving, just hating that my tiny little girl might be thinking I was abandoning her. It broke me some more. I hated it. I was mad!!

We went over to Jimmy’s where the CF ward was after 3/4 weeks ish. We met Doctors, physios, nurses, dieticians and everyone that would be involved with Lauren all in the space of a few days, all with new information. It was so surreal. I would literally sit back sometimes and wish that I was just dreaming because I could not do this. This was too much. And all I wanted was to be home, with my baby and my husband and ignore the world. But that wasn’t an option and this whirlwind seemed to suffocate me a little more each day. All the while trying to stay positive and not let people think you are a blithering mess who couldn’t cope with this baby, just in case they didn’t let her home with me. Irrational thoughts? Yes! But this was no normal set of circumstance.

I was quite timid believe it or not with those involved, I retreated a little because this was all the unknown. I’m so different now with how I respond to others concerning Lauren. Then….I let others take the lead for a while. I’m not sure how long that lasted but it was at least until after she was back in and out of hospital again.

We got to take Lauren home for a weekend, then a crazy doc (who we love) let us take her to Centre Parcs. But about ten days after having her out, we could not settle her at all, it got worse and worse and she was re admitted. It was figured out that she had bad reflux and instead of throwing up all the time it was just burning her within. so we got to spend another ten days in hospital with her. This time we got to stay over night at a house on site for children’s families. It wasn’t as hard leaving her for the night feeds then going back first thing. She got more meds, and put on weight and started to settle just nicely.

Again…we got to go home. But the day we did I had my first panic attack that I ever remember having. My breathing became harder to do, I was crying and said to Jonathan, “I can’t do this Jonathan, It’s too much and I can’t do it”. I felt like I was being suffocated. He calmed me down and balanced the situation out telling me I wasn’t alone, and that he knew we could do it. It was enough to calm me, but I know I definitely did not feel adequate for this almighty task at hand….at this point we also had the glimpse of another problem, but that will be the next episode.

After her surgery, we were called so we could go see her, she was in an incubator, this tiny little body with so many wires coming from her, drugged up to her eye balls and completely out of it. Not a sight a mother wants to see. Not ever.

The Surgeon met with us and told us he’d found something he’d not expected, something called  Meconium Ileus. Basically the first poo babies do is black sticky tar like stuff (EWWW!) but Lauren’s bowels were blocked up with it. He said he juiced out of her bowels 35 cm worth of it. The most he’d ever juiced out of a baby. He didn’t expect it because of two reasons. The midwives had clearly made a huge mistake writing that she had pood twice (his words). Both times were when they had given me about a 20 minute rest each night for the first two nights, since she wouldn’t stop screaming during our hospital stay. He said in all his time the amount that was in her made it nigh on impossible for her to have passed anything. Secondly, he couldn’t see anything on the X-ray and this was now obvious that that was because it was all clogged up.

This was when he said that this condition was linked to Cystic Fibrosis. I’d only heard of this condition once before and my impression of the condition left me thinking there was no way she could have it. I thought it was a lung disease and killed sufferers in their teenage years. He told us that she would be tested for it and we would meet with a doctor from The Cystic Fibrosis unit from Jimmy’s (St. James’s hospital) soon.

A blood test was taken, and a couple of days later we met with Dr Keith Brownlee. He told us a bit about the condition. Explained why she couldn’t pass the sticky stuff in her bowels if she had CF. CF lines the body with thicker stickier mucus than our ‘normal’ bodies. So that against already sticky poo, the two combined made it impossible for her. He told us that her skin would taste salty. And sometimes they do a ‘sweat’ test to diagnose. All in all, after talking to him I knew deep down she had CF. It was hard and there was always a little hope that it was just a bad dream and everything would be OK now. Jonathan was adamant trying to convince himself and me that she didn’t have it. All the while knowing, what would be would be.

Fri 9th January 2009, Jonathan came down from work to the hospital for lunch time. As soon as he’d sat down Deborah a nurse came over very calmly and quietly and just started talking as though she was saying Hi. She said, “we had a phone call from Dr Brownlee this morning and it’s confirmed Lauren does have Cystic Fibrosis”. Jonathan’s face still makes me emotional when thinking about how deeply gutted he was at that news. I went into auto pilot to help him and told him it would be OK. We knew she did really and from what we’d read about it, it was a really good thing that she’d been diagnosed so early in life. That gave her the best shot. We let everyone know and it became more and more real as we did. Surreal at times. Still is to be fair. 

Lauren wasn’t a content baby in those first few days. I hadn’t seen her poo at all. I had this horrid niggling feeling that something was wrong with her bowels. How on earth could I know such a thing?? Well, I was right. On boxing day morning 2008 about 6am, Lauren threw up an illuminous green liquid. It freaked us out enough to know she needed help. I did not know, however, that this was bile. I’m sure I would have had an aneurysm had I known everything right that moment. Midwife of the day sent us back to hospital, they told us what it was and that it was a sign of a blocked bowel. It was at this point I knew we were in for a rough ride. It was also at this point I knew my little girl was a bit like her mummy and let the world know when she wasn’t happy. She was in Neonates in Airedale General Hospital, and she needed a cannula putting in. She fought and fought! I was at the end of the corridor in a parents room because the nurse said I shouldn’t watch it really. Jonathan had to go move the car and call some people. Mum hadn’t arrived yet. I was totally alone. Confused. In floods of tears. I didn’t know how I was supposed to feel, and even questioned myself, should I be tougher than this?! Crazy emotions. The nurse came in finally and with a bit of a laugh (not insensitive) and told me it took 4 of them to get the cannula in. I was secretly thrilled that she had such a fight in her.

She was Blue lighted over to Leeds General Infirmary an hour or so later. I watched them wheel my tiny baby off in an incubator, not allowed to go with her, not allowed to follow the ambulance. I couldn’t stop crying. Jonathan was holding up OK until we left that hospital. It was a dark dark day. We knew very little. and in hind sight, we really knew nothing.

We got to LGI and finally found where she was. When we got in we saw her hooked up to IV anti biotics and in a little plastic bed thingy. No one had warned us that we could stay over night with her so we had nothing with us. Idiots! (them, not us).

Lauren needed bowel surgery. We knew that. We didn’t know why, just that something wasn’t quite right.

We heard from a Registrar, nurses etc, but had to wait until the next day to meet the surgeon who would be performing the surgery. X-rays were done. Lots of talk. Right here was when, if at all, I felt a little bit of assurance that she would be OK. We met the surgeon, who does need a mention, Mr Powis; he was so large in stature, slightly arrogant, confident and I felt, in control of this. I felt she was sort of safe. I did not think at all about what he would actually be doing. At least not at the fore front of my imagination. It was too much. But this guy, he was meant to be the guy who looked after ‘madam’ as he so lovingly called her. He didn’t know what he was going to find, because the x-rays weren’t clear enough for anyone to decipher. This was his job though, and I felt safe knowing that.

The whole way through this, looking back on it, I really didn’t think about much too deeply. I was so caught up in the middle of emotions that I could only handle the here and now. I’m sort of glad. That’s not my philosophy now, but I’m glad it was then.

Handing her to the anaesthetist; well I couldn’t. My body wouldn’t physically allow me to pick her up safely. I was holding all my emotions in so that I wasn’t a complete mess around Lauren. So Jonathan  carried her and held her whilst I kissed her head and smelled her. Then we watched as she was carried off into surgery. And I couldn’t control myself any more whilst we walked out of the hospital utterly devastated and having to wait whilst we hoped someone was saving her life.

When pregnant with Lauren, at about 32 weeks I felt the baby turn. Just at the point where it was supposed to be starting to get into the right position to be born! Stubborn little thing (we didn’t know the sex of the baby at this point). This was distressing to me as I dreaded having a C-section. But after an attempt for the baby to be turned, to no avail, booked in for c-section I was.

Monday 22nd Dec 2008 was the day. I won’t bore you with the details, but after a LOT of drugs, and fairly quick op, Lauren joined us and screamed. Pretty much for the first 24-48 hours!!

Now, when I say that I’m incredibly grateful now that I had to have a C-section, this doesn’t include gratitude for a scar and twinges I still get across it. Those little niggles I hold against my first born dearly 🙂

Shortly after being born Lauren was found to have had a blocked bowel, and problems with her head. Had I given birth naturally, Lauren would have struggled to survive, and the chances are so would I. Her head didn’t have a soft spot (Fontanelle) so the Docs are unsure as to how a birth would have gone for either of us.

Whether you believe in fate, or God, or luck, or have no beliefs whatsoever, we were incredibly blessed to have had things happen how they did. We were both protected and I count myself very lucky to be able to say we were as healthy as we could be once she was here.

I remember holding her for a lengthy period of time, for the first time, once Jonathan left the hospital that first night and I was completely over come with love for my daughter. I knew she had my heart completely and I would do anything for her. Before she was born I’d struggled to feel maternal, not knowing whether it was a boy or girl didn’t work for me! But those moments together solidified it for me, we were bound forever. I loved her. And that love was set to leave me very vulnerable to a pain I couldn’t imagine.

What or Who inspires you the most?

If I had been asked this question more than 5 years ago, my answer may have included my mum, my husband, siblings, the ability humankind has to achieve things like climbing mountains, swimming the English channel, Olympic champions and many more.

Here in 2014, my first and foremost answer exceeds all of them; my daughter Lauren Birch. Born in Dec 2008, Lauren was quickly diagnosed with Cystic Fibrosis (CF), and brain malformations that would leave her with physical and learning disabilities, eye sight problems and more. It’s hard to sum up in a few words what it is that she emulates and inspires in others. Perhaps Love would be a good word. She loves everyone. From her family, to the elderly asian man in asda, to her teachers and friends at church. She waves to everyone. Mostly she gets a response. She has an infectious smile and shares it with the world. She loves to be alive, to be experiencing life and all its pleasures.

She has incredible tolerance. She tolerates an imperfect mother who struggles so much to match what she needs, she tolerates illness like I’ve never known. She will literally be throwing up sometimes, but desperately at the same time try to watch her programme on T.V without missing any!! Haha!! She has so many appointments, but sees them as an opportunity to spread more joy.

She has endurance and patience to keep going when things are hard to do. She teaches me to look for and see the good all around. I think she is here to teach us all something. The most incredible part is, she does all this with very few words. She reminds me to look for the silver lining when it seems there just can’t be one. My little Lauren Birch.