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.