Welcome to Holland

This poem was shared with me by my mums cousin. It sums it up so brilliantly, so beautifully put. I just had to share it with you all.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Cytomegalovirus

Until Tuesday, I had never heard of cytomegalovirus, or CMV as it is often shortened to. After talking to the paediatrician, I decided to look this virus up, and familiarise myself with it as much as I possibly could. I was astounded. CMV is the leading cause of disabilities in newborn infants. More babies are effected each year by CMV than downs syndrome, toxoplasmosis, listeriosis, spina bifida or cystic fibrosis. In fact, according to CMV Action 1 in 1000 newborns will be permanently damaged by CMV. Yet it had not been mentioned to me even once throughout either of my pregnancies. Even more shocking is that upon mentioning it to one of the health visitors, she had no idea about it either. That to me speaks volumes. People need to be aware of CMV. Which is why this entry is so important. If you do anything today, read this entry and share what you learn with as many people as will listen. If even one person reads this and learns something, my blog will have served its purpose.

CMV is a very common virus that is part of the herpes family of viruses. Most people will catch this virus at some point in their life. Chances are you've already had it and were completely oblivious. Most people will not have any symptoms. Others will experience cold or flu like symptoms. In most cases, it does not present a danger. You have it and then it clears up and you're none the wiser. Unless you're pregnant. If you catch this virus for the first time between 12 and 24 weeks pregnant, there is a 1 in 3 chance that it will cross the placenta and infect your unborn child with devastating consequences. CMV is particularly rife in children aged 6 and under. It is most commonly transmitted through bodily fluids. Therefore, pregnant women in close contact with children aged 6 and under are advised to avoid sharing cutlery, drink, dummies and food with them. They are also advised to avoid kissing children on the lips or cheek, instead kissing them on the forehead or giving them lots of cuddles. Of course adults can be infected too, so obvious hygiene measures come into play such as thoroughly washing your hands with hot soapy water after coming into contact with any bodily fluids. Condoms are also advised when partaking in sexual intercourse post conception.

There is no vaccine against CMV at present. People who have already contracted the virus will have antibodies present, but this does not necessarily mean that you are safe against it. As with most illnesses there are different strains. The only way to avoid contraction is by following the measures mentioned above. However, a simple blood test will be able to tell whether you have immunity to certain strains of CMV, and therefore how likely you are to contract it at some point in the future. Antiviral treatment is available to newborns in severe and obvious cases. But once the damage is done, it is done. No amount of antiviral drug will be able to reconstruct the organs effected. Obviously, this will lead to the child proceeding with conditions caused by the virus, in Anna's case, brain damage causing cerebral palsy. You can read more about CMV at the following web addresses:

http://cmvaction.org.uk/
http://www.nhs.uk/conditions/cytomegalovirus/pages/introduction.aspx
http://www.patient.co.uk/doctor/cytomegalovirus
http://en.wikipedia.org/wiki/Cytomegalovirus

Although we're still not 100% sure whether it is CMV that has caused Anna's brain damage, her blood tests indicate that she has been exposed to this at some point, most likely in pregnancy.

I have decided that I will not be posting daily from here. Instead I will post as and when things happen, when I feel like there is something I should let people know and when I feel like I need to get things off my chest. Thank you everybody for your support so far, we're overwhelmed with the amount of well wishes and kind words we've received. It is fantastic to know we're surrounded by such lovely people! Love to you all x

Feelings

Feelings are a funny thing. I ummed and ahhh'd about whether to post this entry. But I have to. One of the main reasons I started this blog was to keep a tab on my feelings, so to not write about this would be  a little hypocritical.

I'm ashamed to admit that the first thing I did after receiving Tuesdays phone call was return to the only coping mechanism I've ever used in times of despair - cigarettes. As soon as I put down the receiver, something inside me just started yearning for a nicotine hit. Rather than fighting it as I should have done, I caved. I don't ever want to be a smoker again. I am more than disappointed in myself for being so weak. I will not rely on cigarettes to get me through this in the long term. But until I have come to terms with it, I will not beat myself up too much. Anything to get me through these first few rocky weeks.

Last night I cried. I cried until I was sick. I cannot remember the last time I cried so hard, I doubt I ever have. It all started when a post appeared on my Facebook newsfeed about a little girl who has been battling cancer. She had stopped breathing and had been rushed into hospital. Her mother had been keeping everybody updated, and had posted one line in particular that struck a chord with me. She said "I then realised, once again, that I cannot actually loose Claudia, not now, not ever.". And it got me thinking. What if Anna dies? I'm not going to pretend this hasn't crossed my mind before, it has many a time. How will I live my life without Anna in it? And then I started thinking a little bit more. What happens when we die? Who will look after Anna? I would never expect Leo to surrender his life to care for his sister, that wouldn't be fair on him. She would have to go into care. And then I thought a little more. She's probably going to have to into care at some point anyway. I won't be able to single handedly care for her when I'm older, or when her needs become more complex. Of course I could be jumping the gun a little, but it may happen. After this my mind turned to our financial situation. At present, I earn enough to cover our rent and perhaps do a couple of food shops. The rest is paid by Sam. We're not going to have this income anymore. And I panicked. Once again I reached for a cigarette. But we didn't have any. And that was what pushed me over. Ridiculous! 

People keep telling me how brave I am. But really, I'm not brave at all. I'm scared. I'm scared about what what the future holds for us all. I'm sad my baby will never live the life she should be living. I have no choice but to except what is happening and make the best of an awful situation. But I'm trying to stay as positive as I can. I have no choice but to. Wallowing in self pity will not get us anywhere. I need to be strong for my children, for Sam, for my family and for myself. I refuse to let this ruin our lives. 

An almost diagnosis

As Anna is settled and Leo has decided 6pm is the perfect time for a nap (God help us later!), I thought this would be the perfect opportunity to update you all.

This morning my aunt, Sam and I arrived at Birmingham Children's Hospital at 11am in preparation for our consultation with Anna's paediatrician. As Anna's weight and length was measured yesterday, the pre admission nurses didn't really have much to do with her today, so we were sent through to the doctors waiting area. We were called in at around 12pm. Our paediatrician gave Anna a check up, testing her muscle strength in her limbs, listening to her chest and checking her level of head support. We explained the areas we thought she was making progress, however minor it may be. The paediatrician listened and agreed, but also thought she was going backwards in some areas too. She asked us if she often crosses her legs at the ankles, which she does. I have noticed this since the beginning. It is this in particular that has crossed my mind time and time again. From this question, I knew what was coming, so I mentioned it first. "This is why I have thought cerebral palsy is a possibility.". We all sat back down when the paediatrician began explaining to us what had been discovered.

"You mention cerebral palsy. There is a very high possibility that this is what we're looking at" and we progressed to look at Anna's MRI images. They clearly showed that she had more fluid than normal around the back of her brain, and the folds of the brain were much smoother than normal. I asked on a level of mild to severe, what are we looking at, are we on the more severe side of the spectrum? I already know the answer before she tells us. "Possibly" she says. And surprisingly, I'm okay with that. I suppose because it is what I've been expecting all along. One of Anna's blood tests show that she has been exposed to cytomegalovirus at some point, but in order for them to determine that this is the cause of her brain damage whilst in utero they need to go back and retest her newborn heel prick sample. So we sign the consent form to allow for this. The neurological disorder is mentioned again, along with the possibility of a metabolic disorder. Anna has had two more blood tests today to check for signs of these, and we are going back to see a neurologist at some point in the near future to discuss the possibility of these illnesses. However, in not so many words, I think we already have the answer. If CMV shows up in Anna's first blood sample, we will know for certain that this is what has caused our beautiful baby's disability.

We still do not have a confirmed diagnosis. The answers we need are just out of reach, but we have a better understanding of what to expect. Today I haven't cried. In fact I am happy. I am more than happy, I am over the moon that we are finally getting somewhere! I will not be returning to work. I am trying to get hold of my employer to arrange a meeting where I can explain our situation. At first I was a little upset about this, those of you that know me well know that I have just completed an access course in nursing and health and biological science. My plan was to continue to university at some point in the not too distant future. I had finally found a job I enjoyed and that I actually felt good at. But now I feel blessed. I still get to be a nurse, except it will be on a one to one basis with the most perfect little patient in the world! And who knows, she could surprise us yet! Whatever happens happens, we cannot change her brain, it is the way it is forever, but I love Anna's brain as much as I love the rest of her. Yes it will be difficult, yes there will be days where I feel like packing it all in and giving up, but I genuinely think that this little girl will be the making of not only me, but our whole family. 

The back story

I'd like to start my first blog by saying hello to anybody who has taken the time to read this. A little bit about me before I get to it. My name is Lucy. I'm a 24 year old mother to two beautiful children. Leo is 3 years old and is a real little character. Bouncing and bubbly, he brightens up everybody's day with his funny little quips! And then there is Anna, my gorgeously beautiful 6 month old Christmas pud. My main reason for starting this blog. Many people I know will have seen a fair bit on the various social media platforms I use about Anna just lately. A lot of people will be wondering what is wrong with her but won't want to ask for fear of appearing intrusive or nosey. So I have decided to start this blog. As a record for myself. A way of sharing information with people that care. And a way of raising awareness for the illness that has become a massive part of our lives.

On the 27th December 2013 at 6:36am weighing 7lb2.5oz, our little girl made her speedy entrance into the world. We left the birthing pool and Anna had her initial newborn check. The first thing that was noted was her "low birth weight". I know what a lot of you will be thinking, 7lb2.5oz is fairly decent birth weight, however as Leo was 9lb13oz born they were expecting me to be carrying another whopper! A set of observations showed that her body temperature had dipped a little. While indulging in a little skin to skin to try and raise her temperature, Anna started choking for the first time. Although I panicked a little, I guessed this was due to quick delivery and meconium filled waters she had been born in. Anna was little over 2 hours old when she had her first hearing check. She failed both ears, but we were not too worried as she was still very new and probably filled with gunk! We were kept in for just over 24 hours as precautionary monitoring was required. The following morning, another hearing test was completed. Her left ear passed, her right ear failed. Still not overly concerned, we were asked to return a week later for further testing. And then we were sent home to begin our life as a family of four. The choking continued, and I mentioned it to anybody who would listen. I was reassured that it was normal for this to happen. Keep her upright, take her into steam filled rooms, it'll clear eventually. Her heel prick test for cystic fibrosis came back as normal, so I once again started to relax a little, thinking maybe I was being a little too over protective.

Around a week later we returned to the hospital for a more in depth hearing test. The equipment wasn't working properly, but the response that was being picked up showed that Anna had a moderate to severe hearing loss in both ears. We were referred to the audiology department at Birmingham Childrens hospital. She needed to be asleep for the further testing, however she would not settle, so the decision was made to come back for a sedated hearing test. By this point Anna was around 10 weeks old. The choking was continuing and I noticed she didn't seem to be developing at the same rate as Leo had. Her head support was still very poor, and her hand were still all curled up like a newborns. She was also having trouble gaining weight. I was exclusively breastfeeding, and beating myself up relentlessly that she didn't seem to be gaining as well as we expected. We were put on fortnightly health visitor visits, so that they could keep an eye on her gain. I introduced 2 bottles of formula a day for peace of mind as I was losing faith in myself and my milk producing capability, however she still seemed to be struggling to catch up.

A few days before Anna was due to have her sedation, we had a pre-op assessment. I mentioned the choking to the nurses, along with my concerns about her development and her weight gain issues. They agreed that something was not quite right. I was advised to return to the family GP and request a full paediatric review under one of their consultants. It was at this GP appointment that the doctor noticed Anna had microcephaly - her head was not growing in accordance to the usual rate. She referred us there and then. The health visitors were advised that head circumference should be checked at every appointment. In the mean time, the audiology department contacted us and said based on the results they had managed to obtain, they wanted to issue Anna with a bone conduction hearing aid until she was old enough for the full test to determine the extent of her hearing loss. 

We received our appointment with the paediatrician for the same day we got Anna's hearing aid. We explained our concerns to the paediatrician, who gave her a looking over. We all sat back down, when the paediatrician said something we did not want to hear. "I hate having to tell any parent this but I think there is something wrong with your baby." I don't remember what was said in great detail after this. She was going to refer us for all sorts of scans and tests. She wanted to do genetic testing. We were to go and have blood and urine samples taken there and then. Then we were to take her to heart investigations where she would have an ECG. I cried. My partner cried. My aunt, who was with us, cried. The best thing about the day was seeing Anna's face when the hearing aid was switched on for the first time! It was extremely bittersweet. Our little pumpkin could hear me for the first time, but we also realised this was just the beginning of a very tough time for us.

At our next health visitor appointment, I explained what had happened. My health visitor was fantastic. Straight away, we were referred to physiotherapy, the early years special educational needs service and for a swallowing assessment. One by one we received our hospital appointments. The first was an echo cardiogram on Anna's heart. Next was a barium swallow on her stomach, which showed evidence of reflux. Then the MRI on Anna's brain. We were referred to the dietician and ear, nose and throat specialists. Our lives suddenly became a barrage of hospital appointments, but we would have done it 1000 times or more if it meant our baby had a chance of diagnosis. 

On the morning of Tuesday 15th July I received a phone call from Anna's paediatrician. She began the call asking how Anna had been, whether there was any progress. I told her how her weight gain seems to be improving. We have started weaning and she seems to be enjoying it. Her head seems to be slowly creeping up the chart and on to the 0.4th percentile. How much she smiles, responding to our expressions and playing. How she follows her big brother around the room with her eyes, watching his every move intently and letting out sighs and giggles as she does so. How she's trying so desperately to hold her head up, how she tries so desperately to grab for her toys. But she's not yet babbling much. Despite trying, she is unable to grasp things. She cannot roll from front to back. She can only hold her head up for short periods of time. The paediatrician then told me she was calling with some of the results of Annas tests. "Some of the results are not normal. The stomach scan shows reflux. We need to start her on gaviscon and ranitidine as soon as possible. I'm sorry to have to tell you this over the phone, but her brain scan was not normal either. Her brain has a smooth surface and there are gaps.." at this point everything has become a little blurry. I remember her saying she had whittled a diagnosis down to 3 possibilities. One was a neurological disorder, but having sat down with a specialist in the field that morning they had pretty much written that one out. A second possibility, I cannot quite remember what, did not seem too likely as not everything matched up. The third and most likely cause is that I had been exposed to a virus at some point in my pregnancy that has caused permanent brain damage. I never would have known, asymptomatic, nothing anyone could have done. The virus is called cytomegalovirus. Or CMV for short. We are to go back tomorrow, the 17th July, to discuss what this means for Anna. How it will effect her. And to give consent for a further blood test to check for immunity to this virus in her blood. 

I am numb. It doesn't feel like this is happening to us. It is not real. I am trying to stay practical. I have an idea about what this COULD mean for us. I have done a fair amount of research since yesterdays phone call. But I do not want to think about anything until we have tomorrow out of the way. I am hoping that this blood test will give us the answers we so desperately need. Whatever happens, she is still OUR baby. She is the same baby today as she was last week. She is so happy, I can honestly say I have never come across a baby who is so delightful to be around. And I can tell she knows how much she is loved and adored by everybody who has had the fortune of meeting her so far. I don't want to get my hopes up. I am scared that if I do, I will not be able to cope anymore. She is a wonderful child who means more to us than she'll ever know. We'll get there, as we all have each other, and that is all that matters. So there you have her story so far. As soon as I feel up for posting tomorrows news, I shall. Forgive me if it takes a while. I will also post a further entry about CMV at some point. I am using this blog as a way of recording what happens when. Dates, appointments, feelings, progress. I am posting this blog in the hope that one day, Anna will be able to look back and see how far she has come. I am posting this blog to keep all of my loved ones updated, and to educate people about CMV. If anybody wants to know anything at all, please do not hesitate asking Sam or I, we will not turn you away, we will not begrudge you for asking. We are aware that people are concerned and intrigued. And the more we can share, the better.