Bad Day

The first few posts have all been like story. Memories of what happened, recorded as honestly as possible but with the obvious benefit of hindsight. From now, posts will be more immediate, more  'in the moment' and possibly more rash. I may regret what I write a little more, but I will always try and be honest as to how I feel.

So, here goes....

Today is not a good day.

I can't tell you why exactly. I woke up feeling a weight of sadness in my chest. Sadness for the situation, and knowing what is to come.

The baby is kicking away in my stomach, quite oblivious to what is ahead for him. The operations, the hospital visits, the prodding and the poking. And I feel sorry for him because it has to be done, and it's undoubtably for the best. But that doesn't mean I want it for him.

I also know for sure that it is far better that all of the procedures happen while he is a baby. I imagine trying to explain what is going to happen to my 3 year old; independent, aware of and interested in everything. Of course it's better it happens when the baby is small. But that does not mean I want it for him.

I'm worried about what will happen in the hours after he is here. How will he feed? Bottle? Syringe? Tube?

Will we be separated? I know that he may need to go to Special Care Baby Unit so they can help with feeding. Will he know that he's away from us? Will he wonder where we are?

My rational brain knows that the midwives, the cleft team and everyone else will make sure he is fed. That if he does need to go to SCBU he won't be away from us. We'll be there, next to him, fighting everything alongside him so he will never be alone. But that doesn't mean I want it for him.

Finally I feel guilty, because I'm now 38 weeks pregnant and desperate for him to be here. I'm desperate to see him and be able to do something for him. The feeling of impotence I've had for the last 18 weeks is becoming unbearable. I am a do-er, and not being able to do anything is crippling. But with that is the knowledge that by wishing him here earlier I am wishing the operations, the hospital visits, the prodding and the poking on him all the sooner. Any that's not fair. He seem's to be happy where he is, even if I am not.

After the initial diagnosis I became very, very good at compartmentalising everything. I was able to have frequent, detailed conversations with family and friends about the cleft. What it was, what it would look like, what operations he will need and how I was absolutely fine with it. I would do all of that without actually thinking about what was coming. I would go through the conversation by rote time and time again, without ever actually dealing with it. I thought that by acting like I was fine, I would be fine. I knew deep down that it doesn't work like that, and when I was on my own, with the world locked out, I would cry and allow myself to not be ok for a while.

Days like this have become, thankfully, much less frequent as the weeks have passed, and for the most part I can honestly say I've become ok with it. Or, if not ok with it, used to it. Able to live with it rather than around it. That said, I reserve the right to revert to a bad day like today.

If you're reading this as a parent dealing with a new diagnoses, please don't be alarmed. You will have times like this, but by talking to someone about it you can work through the sadness and back towards being ok again. Talk to your partner, your parents, a friend, anyone. If you are carrying the baby yourself remember that pregnancy hormones are a bloody nuisance and have a way of distorting the magnitude of what you are feeling. That doesn't mean that what you are feeling is wrong, or that you are overreacting, but it does mean that the immediate pain and panic will pass and rational you will be back soon.

In the mean time you have my permission to grab a cup of tea (in leiu of Gin) and a packet of biscuits and to put your feet up. Homes Under the Hammer starts soon.  Take your time to relax and be ok again, and know that however alone you may feel that you are not. There is huge support out there for when you need it.

Much love.

I'm off in search of cookies.

Mantra

Within two hours of leaving Birmingham Women's Hospital I had received a call from the Cleft Team at Birmingham Children's Hospital (BCH) and an appointment was made for our local Cleft Nurse to visit us at home in two days time.

The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.

"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."

I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.

Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.

We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.

When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.

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*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!

Confirmation

Tuesday finally dawned after the longest weekend of my life. I dont know how much I slept that night, but I know it wasn't much. I couldn't so much as look at food without feeling sick, and when I thought too much about anything at all I would have to run to the sink to dry wretch and sob.

The appointment was at lunchtime so I spent the morning in a haze. My inlaws arrived so my mother in law could come with us, and my father in law could take my son out for the day with my dad. We all sat around trying to act as normal as possible, as much for our own sanity as anything else. I tried, but I wasn't coping at all well. It was cold outside, the wind was bitter, but i kept finding excuses to go and sit in the garden away from everyone else.

Finally, after what seemed like days, it was time to go.

My mum drove us all the hour or so to the hospital. Oddly, as we headed for the motorway, my nausea lifted. We were doing something. I wasn't just sat at home staring at a wall. We were doing a something, a positive action rather than passive thought. It was amazing what a difference that made. I remember even laughing on the way there. Aside from feeling groggy with a sore throat (which I put down as the result of near constant sobbing) it was the most normal I had felt in nearly a week.

All that changed in the waiting room. The longer I sat there staring at the TV, the worse I felt. Sick. Shaky. Light headed. The minutes dragged by, and every time one of the staff came into the waiting room I jumped about a foot in the air. Several times I nearly passed out. I was sat doing nothing but thinking and thinking was not a good thing.

We knew the Doctors were running behind, but we didn't really mind. If they were running behind it probably meant that somebody had had some devastating news to deal with, and although we didn't know what was in store for us, we took some comfort in knowing that we would be looked after and given time.

Eventually, it was our turn. We filed into the scanning room with the consultant and stared at the screen. The consultant was lovely and explained what she was looking at, but she didn't need to. I saw the cleft as plain as day. She did lots of measurements and looked in detail at every part of the baby, measuring sizes and spaces and God knows what else.

Just as she finished we asked if she could tell us what we were having. A week ago we didn't want to know, but now we were desperate. We wanted to build a personality for our child, and not have them defined by what lay ahead regardless of what it was. She had a look and there was no doubt.

A boy. Another little boy.

We were delighted to know. It didn't matter to us either way but we knew and it made all the difference.

After wiping the conductive gel off my stomach (how does that stuff get EVERYWHERE?) we were shown into another room and left for a few minutes while the Doctor colated everything. She came in  with  a midwife and went through what she had found.

The diagnoses of a cleft lip was confirmed, and a cleft palate was probable although always difficult to confirm.

It was a unilateral cleft on the left hand side, and unilateral clefts are less likely to be connected to chromosome abnormalities. This coupled with the fact that all other measurements were completely normal meant that she thought that there was a less than 0.5% chance of a chromosome abnormality. The risk to the baby of a miscarriage through amniocentesis is 1%. The decision was made for us. If we were to have the amniocentesis test and it caused a miscarriage, the likelihood is we would have miscarried a healthy baby.

I must stress again here that this was our decision. I would never ever judge anyone for making a different decision. 

It was the best outcome we could have hoped for. We knew they were never going to say 100% that everything was going to be ok. We knew that they would never 100% rule out chromosomal issues, but if you had asked me that morning I would have bitten your hand off for 0.5%.

The Doctor and Midwife explained everything clearly, answered all of our questions and gave us all the time and space we needed. They fully explained that amniocentesis proceedure and, although we declined, said we could contact them if we changed our mind. They arranged for the cleft team from Birmingham Children's Hospital to make contact with us but otherwise all other antenatal care and delivery could take place at our local hospital.

We left with a numb relief and started phoning our immediate family to tell them the news.

We knew we had a long way to go, but knowing what we were facing gave us a starting point. We hadn't come to terms with it yet, not by a long way, but by knowing what we were dealing with meant we could work towards accepting it and moving forward. I was 21 + 2. What a difference a week makes.

Limbo

Good Friday to Easter Monday are a bit of a blur to me. I seemed to exist in 3 states. Nausea/Vomiting, Sobbing and zombie numbness. I fluctuated between them in varying and interesting combinations, but they were all there. 

The nausea/vomiting began in earnest on Good Friday morning. On Thursday night my husband and I, mistakenly thinking it may reassure us, read through all of the information which was sent to us by our referral midwife. It was the start of a thought we have had a lot over the last 3 months, which is 'We know you have to tell us all of the possibilities and risks, but we really REALLY wish you wouldn't.' I'm not a believer in sugar coating generally, but occasionally it has its uses. 

The next morning I woke up feeling sick. Within an hour or two I was being sick, barely able to keep anything down. 

I'm slightly phobic about vomiting, so have been lucky that neither pregnancies have resulted in morning sickness as such, more 6 weeks of constant nausea and the ability to tolerate a very narrow range of foods. I never actually vomited with either pregnancy until this point. Over the next few days I seem to remember that's all I did. 

I was lucky enough to be on holiday for Easter but my poor husband had to work all weekend except Sunday and I still have no idea how he managed to do it without cracking. The waiting was unbearable. On Easter Day, normally a bright and happy day in our family, my husband and I took our son to a local National Trust house to walk the grounds. We didn't feel bright or happy. We didn't feel joyful at Easter Day. We felt numb. We walked in the bright sunshine, chasing our little boy up and over fallen trees. We tried to be happy and normal for him but we wanted to run away ourselves. 

What the hell were we going to do?

Would we have to have an amnio?

What would it show?

Was it something I had done?

I am never great at remembering tablets at the best of times. Did I miss one too many Folic Acid or Multivitamin? 

Was it the cold and flu medication I was taking before I found out I was pregnant?

Was it the quarter glass of champagne on Christmas Day?

Was this all my fault?

In my heart of hearts I think I knew it hadn't been anything I had done, but when you are in limbo like that for 5 days rationality goes out of the window.

In the end, over the days and days of existing, we made a decision on the amnio test. If the scan showed anything, other than the cleft, that pointed to a genetic abnormality we would have the amnio. We would rather know and prepare for the future than spend the next 4 months in limbo. 

I want to stress that this was OUR decision. I am certainly not advocating it as the correct one! You must do what you feel is right for you, your family and (frankly) your mental health. 

We also decided to find out the gender of the baby. This was something we hadn't planned on doing. We hadn't found out with our son and had no intention to with this baby. As the weekend dragged on though, I began to want to know. In fact I think I needed to know. I wanted the baby to be a person with an identity, not an unknown. Not a 'thing with a thing'. I talked it through with my husband and he agreed. It would give us something to focus on. Something positive in the midst of this utter nightmare. 

By Easter Monday, news had got around to people we knew about what was going on. The text messages and emails we got, both direct to us and via our parents, were wonderful. Kind words and reassurances from friends who had had experiences with clefts professionally (as Doctors, Teachers or Speech and Language Therapists), personally, or not at all, was overwhelming. 

Now, Im going to have to be careful here. I don't want to offend any of the lovely people who supported us that week. However the point of this blog is to (hopefully) help other parents know they are not alone in their feelings. Therefore I feel I need to be honest. If you are one of the people who have messaged us or another family offering support please don't be upset or offended by what I am about to say.  

While the messages were a massive comfort, they almost all focused on the Cleft which at the time was the least of our worries. It was the genetic disorders. The unknown. That's what terrified us. I really don't mean that to sound ungrateful or disingenuous to anyone who offered support. We know it was heartfelt and really did appreciate it, but at the same time it increased our (well certainly my) feeling of isolation. A feeling that other people didn't quite 'get it'. This is not a criticism in any way, but it's an honest account of how I felt. 

If you know someone who gets a cleft diagnosis please do contact them. Offer thoughts/prayers/cake. ANYTHING. Because it will be appreciated and leaned upon over the following weeks and months. And if you have had the diagnosis, don't feel guilty about what you feel. Everyone deals with things in different ways. No one is right. Just do what you've got to do to get to the next day. 

And if you were one of my amazing friends and family who offered support, THANK YOU. I have looked back on your messages many times during the weeks and I will never be able to tell you how much they have helped. 

Start Spreading The News

The diagnosis was made on the Wednesday before the Easter weekend. I spent the rest of that day in something of a daze. I know what I did, but my memories of it are a bit foggy. One thing I didn't do was tell many people

This was a conscious decision by me and my husband. We didn't want people to know, and to have to deal with the inevitable questions, until we had got our heads around it ourselves. Our immediate family knew, and I told my best friend, L, by text the same morning, but that's it. I'll be honest, I didn't want to talk about it. I didn't want to explain, to be asked questions I didn't know the answers to, or to deal with the sideways tilt of the head. I knew that everyone would mean well and be supportive, but I didn't want to have to deal with that support.

I spent the next 24 hour waiting for the referral phone call, jumping whenever my phone beeped. The phone did not leave my hand all day and all night. I remember sleeping with it on loud, in case they had nocturnal staff at the women's hospital. When sleep eventually came it was deep and exhausted. But I still woke up if an email came through, and snatched my phone up to look.

When the phone call did come, I was in the middle of a National Trust field. L had invited me out to walk with her husband and 2 girls. The two girls would keep my son entertained, and I could walk. I like walking. It sorts my head out. Topics for discussion was anything and everything, including the cleft and what we knew which was essentially nothing. I'm a big believer in not googling anything medical, and L agreed having had her own share of medical issues over the years. The phone call came and the appointment was scheduled for the following Tuesday due to the long weekend.

5 whole days.

What the hell was I going to do for 5 days.

That said, after a morning with L and her family, I felt close to normal. I went home and did things. Couldn't tell you what but i do remember feeling like I had accomplished something. I felt like I was okay with this, that I could deal with the world and lie my way till Tuesday until I had more information and could start telling everyone.

I was wrong.

That evening, Maunday Thursday, marks the start of Holy Weekend. I sing in a church choir, so was due to sing with my friends in a quiet service that evening. I thought I would be fine, and that I could do it. That I could talk and laugh with friends and say "oh fine," as they asked how I was and how the baby was doing, I thought that if i kept telling myself I was fine, I would be.

I lasted two minutes.

Walking into that room my head filled with white noise, and my stomach dropped. I had to get out. I had to leave before anyone saw me. I hid at the back of Church wondering what the hell I was going to do and then I left. I tried to keep calm as I drove home. The white noise still filled my head and I felt sick. I was in no fit state to drive really, but I needed to get as far away from the white noise as i could.

Once home I collapsed onto my bed and sobbed, and sobbed, and sobbed. It must have been nearly two hours. My husband and I just lay there, me sobbing, him just being phenomenal and telling me it would all be alright. My mum came home and hugged me and we all just sat there, me a wreck, everyone else incredibly strong.

We talked about our fears, and my fear specifically of having to tell people. To have to go over everything repeatedly to everyone. To have to explain, to be asked questions I didn't know the answers to, and to deal with the sideways tilt of the head.

We came up with a plan.

We emailed and telephoned a handful of family and friends and asked them to pass on the news to other people. I was worried at the time that this was a cop out, and that it was unfair to pass our bad news to others to pass on. In retrospect it was the best thing that we could have done, neither husband or I were in the right frame of mind to repeatedly go over what we knew and didn't know, and our friends and family were wonderful to do that for us.

Over the next few days, the news filtered out and the support we got was unbelievable.

Meanwhile, I was not sleeping and vomiting frequently. My nerves had gone.

The Beginning

Easter 2016

"I think I can see something," the sonographer said, looking closely at the screen.

"Okay" I replied brightly as my husband squeezed my hand. I moved my eyes towards the screen, and I saw her looking at the baby's face. I remember thinking that it looked like Pob, but with a dark shadow across one side.....

"I'm afraid I can see a cleft lip on your baby".

"Oh"

I didn't say anything at first. Then tears started coming. Slowly at first, and then faster. I remember not being sure why I was crying. I suppose we had gone in there with the arrogance of parents with a 'normal' child. We'd even taken my Mother in Law as a surprise. I hadn't expected anything like this.

The scan finished, and the sonographer explained that we would need to be seen by Birmingham Women's Hospital, and that a referral midwife would be in contact soon to explain everything.

I remember nodding a lot.

We walked to the car. I was still a bit teary, but in control. After all, a lip could be fixed. I kept telling myself that a lip could be fixed.

I remember pulling up outside my dad's office.

I remember my husband ringing my dad asking him to come down.

I remember seeing my dad, and breaking down.

I remember how worried he looked as I couldn't get my words out, how gasped for breath between sobs, and how eventually my sainted mother in law explained what we had been told.

I remember waiting for my mum to arrive with my son. And waiting. And waiting. It was probably only 2 minutes. It felt longer.

I remember explaining to her in between sobs what had been said.

I remember my son in the back of her car crying because I was upset and he didn't understand why.

I remember sitting at home watching a cup of tea go cold.

I remember laughing at conversations I wasn't really listening to.

I remember the referral midwife calling, explaining the referral process and the information about amniocentesis testing she would send through.

I remember saying that we'd had the Down Syndrome test and that we hadn't needed amniocentesis. After all it was just a lip. A lip can be fixed.

I remember her saying, delicately, that a diagnosed cleft can be a symptom of a genetic disorder such as Edwards or Patau's Syndrome.

I'll be honest, I don't remember a great deal after that.