I'm 5 ft 3'. My husband is 5 ft 6 1/2' (the 1/2 is important!).
Originally the hospital's major concern at the 20 week scan was that her legs were measuring two weeks behind and putting her below the 5th percentile. It was what they called a 'soft marker' for something more sinister. By 22 week scan she was measuring below the 3rd percentile when they picked up the cleft.
We can just about remember the consultant throwing around medical terms for what could be wrong, but on my notes they provided a list of things we needed to consider (or enlist Dr Google's help).
1. It could be a chromosonal abnormality
2. Isolated cleft
3. Constitutionally small baby
4. IUGR
We would be booked in for growth scans at 28 and 34 weeks. By this point I realised our poor seed may be scanned upwards of ten times.
For most women, scans bring joy and happiness. The 20 week scan is usually the trigger to go and buy lots of lovely things for the baby, find out the gender, see the baby growing, get a nice picture etc.
We only have the picture from the 12 week scan. They suggested to us at the anomaly scans that we don't get one (pretty angry about that really). Sometimes in scans I have to shut my eyes as tightly as I can before my husband squeezes me to say it's ok. There is a breathless, constricting feeling that chokes me in the waiting room even before we walk through the doors.
We had our 28 week growth scan on the last day of term. I realised with mounting horror, that we were being taken into the same room where we had all the bad scans before. The sonographer asked us if we wanted to swap rooms with someone, but we declined. No good ever came from running away.
Our sonographer gave us the most positive experience to date. She answered all of our inane questions and spent 30 minutes measuring and re-measuring. Seed had moved from 3rd to 5th percentile again for her femurs. She continues to be around two weeks behind the rest of her, but does follow the same pattern. She is also finally plotting on the NHS charts for growth.
We are still not sure what this means for our seed. We met with a consultant after a three hour wait, who rushed us through without allowing any questions. She also admitted they had forgotten to send off our cleft referral (another story).
I'm currently nearly 33 weeks. Next Friday, we have our 34 week growth scan and I am petrified. I'm trying to nourish her every day to help make her strong (though I'm not sure Hobnobs count...), I'm staying active and finally this blog has helped me in a way I never thought it could. For the first time, I can sleep a little better at night. It's nice knowing you're not alone.
Sunday 17 August 2014
Friday 15 August 2014
Reactions/support
We've been very open with family and friends about our journey and tried to keep them up to date when they ask. Some of you may find, as we did, that you will be surprised by where the support comes from in the early days. Some friends we thought would offer a shoulder to cry on/a visit/ support were not really around. Some were there throughout and continue to be our greatest support alongside our family. I do not blame the former, you never know what battles people are facing every day, but just be prepared to be open to new support networks and friends.
Some of the most supportive comments we received were from a Mumsnet group and truly helped us feel like we weren't alone. We also found the CLAPA website extremely informative and other blogs written by parents and children affected by a cleft diganosis.
Tuesday 22 July 2014
CLAPA and unexpected meetings
One of the best sources of information we were directed to during our Cleft research was the CLAPA website.
We quickly found out that we could qualify for a free 4d scan between 26-32 weeks to see the severity of the cleft. My husband was very keen to have the scan, I was not. I didn't want to go through another scan, didn't want that sinking feeling when they might identify something else.
I spent some time looking at images of varying degrees of unilateral clefts before I went. I felt if I prepared for the worse, I could somehow protect myself.
The nearest clinic to us was 'Babyvision' in Shrewsbury, a fantastic clinic housed in a converted barn on the outskirts of the town. I'd been concerned about seed being in her usual 'bum up' position, so I crammed a Mars Bar down my throat whilst in the waiting room. Lo and behold there she was dancing away when the wand transmitted the image back to the screen. Stubborn as she is, she lay with her left cheek against my uterus (where the cleft is). I didn't see any of that though, because I couldn't believe how beautiful she was; she looked just like the hubbie in profile.
At first we didn't see the cleft and for one heart-stopping minute, I thought they had it wrong; that it wasn't there. She shifted a little better into view and we could see it, though it wasn't nearly as horrific as I had thought. I intend to post some pics when I can load them (techno wizard I am not) but it looked like her nose wasn't completely collapsed as you sometimes see and it was definitely just on the left side.
We spent some time watching her suck her thumb, pull up her eyelid and then, with perfect timing, stick two fingers up at us, as if telling us she would like to go back to sleep and not have people gawking at her anymore.
We got two free print outs in colour, a strip of black and white images and a video to go home with. We treasure these massively, as we had not had those lovely scan photos before. It was nice to finally have some to show family and friends too, although they felt more sorry for the fact she looked like her dad than anything!
The one thing people keep telling us is how 'common' a cleft diganosis is. I usually politely nod and agree, but inside I'm wondering where they all are. However, it was only from sharing our experiences that people would say to us, 'Oh, my niece has just been born with a bilateral cleft'... and so on.
About two weeks after our 4d scan my husband was in Pets at home, when he noticed a little boy with some faint scars above his lip. Being way braver than I could be, he approached the mother and explained our situation and asked if her son had also been born with a cleft. The mother was unbelievably supportive and gave him her phone number, chatted about their experiences and has since sent us photos and recommended groups we can join for support. We have been truly touched and encouraged by this and again has shown that support and friendship can come from the most unlikely places.
We quickly found out that we could qualify for a free 4d scan between 26-32 weeks to see the severity of the cleft. My husband was very keen to have the scan, I was not. I didn't want to go through another scan, didn't want that sinking feeling when they might identify something else.
I spent some time looking at images of varying degrees of unilateral clefts before I went. I felt if I prepared for the worse, I could somehow protect myself.
The nearest clinic to us was 'Babyvision' in Shrewsbury, a fantastic clinic housed in a converted barn on the outskirts of the town. I'd been concerned about seed being in her usual 'bum up' position, so I crammed a Mars Bar down my throat whilst in the waiting room. Lo and behold there she was dancing away when the wand transmitted the image back to the screen. Stubborn as she is, she lay with her left cheek against my uterus (where the cleft is). I didn't see any of that though, because I couldn't believe how beautiful she was; she looked just like the hubbie in profile.
At first we didn't see the cleft and for one heart-stopping minute, I thought they had it wrong; that it wasn't there. She shifted a little better into view and we could see it, though it wasn't nearly as horrific as I had thought. I intend to post some pics when I can load them (techno wizard I am not) but it looked like her nose wasn't completely collapsed as you sometimes see and it was definitely just on the left side.
We spent some time watching her suck her thumb, pull up her eyelid and then, with perfect timing, stick two fingers up at us, as if telling us she would like to go back to sleep and not have people gawking at her anymore.
We got two free print outs in colour, a strip of black and white images and a video to go home with. We treasure these massively, as we had not had those lovely scan photos before. It was nice to finally have some to show family and friends too, although they felt more sorry for the fact she looked like her dad than anything!
The one thing people keep telling us is how 'common' a cleft diganosis is. I usually politely nod and agree, but inside I'm wondering where they all are. However, it was only from sharing our experiences that people would say to us, 'Oh, my niece has just been born with a bilateral cleft'... and so on.
About two weeks after our 4d scan my husband was in Pets at home, when he noticed a little boy with some faint scars above his lip. Being way braver than I could be, he approached the mother and explained our situation and asked if her son had also been born with a cleft. The mother was unbelievably supportive and gave him her phone number, chatted about their experiences and has since sent us photos and recommended groups we can join for support. We have been truly touched and encouraged by this and again has shown that support and friendship can come from the most unlikely places.
Monday 30 June 2014
Becoming 'fine' with it
A cleft is literally a split or gap in the upper mouth. The face and upper lip develops between the 5th and 9th week of pregnancy and sometimes the muscles do not fuse together properly, though they are there.
As far as we know our little girl has a left sided unilateral cleft lip. We won't know until she is born if it is the palate as well, but we are assuming so.
After the anomaly scan I prayed and prayed it was 'just a cleft' and not another sinister condition. I didn't want to allow myself a pity party and wanted a plan of attack straight away. I had questions, I had concerns, I was lost in a sea of medical jargon and research, and, a tiny part of me kept thinking that I had done something to cause this.
We are very lucky to be next to the world renowned Birmingham Children's hospital and we have a wonderful cleft nurse who will be working with us. She recently paid us a home visit where we spent a couple of hours talking through latest research, medical research we can take part in and so on. She reassured us that this wasn't our fault. I have never smoked, took all my folic acid, didn't drink a drop of alcohol, nothing in the family genes to speak of. Yet, still I have to swallow the feeling that I couldn't protect her from this even when she is tucked away inside me away from the big bad world. I know these are real and justified emotions, so I try to acknowledge them and then send them on their way.
I admit, I found it hard to come to terms with perhaps not being able to breastfeed, though I can express. I also felt like we 'lost' the chance to enjoy some of the pregnancy and I worried, still worry, about the operations, the recovery etc. and how many ops our little seed may have to have.
But, we both realised very early on, that this is a temporary and fixable situation. That's not always the case with so many families who find out awful news at their 20 week scan. Yes, it's tough at times, but hubbie and I are strong and I know our seed is too.
As far as we know our little girl has a left sided unilateral cleft lip. We won't know until she is born if it is the palate as well, but we are assuming so.
After the anomaly scan I prayed and prayed it was 'just a cleft' and not another sinister condition. I didn't want to allow myself a pity party and wanted a plan of attack straight away. I had questions, I had concerns, I was lost in a sea of medical jargon and research, and, a tiny part of me kept thinking that I had done something to cause this.
We are very lucky to be next to the world renowned Birmingham Children's hospital and we have a wonderful cleft nurse who will be working with us. She recently paid us a home visit where we spent a couple of hours talking through latest research, medical research we can take part in and so on. She reassured us that this wasn't our fault. I have never smoked, took all my folic acid, didn't drink a drop of alcohol, nothing in the family genes to speak of. Yet, still I have to swallow the feeling that I couldn't protect her from this even when she is tucked away inside me away from the big bad world. I know these are real and justified emotions, so I try to acknowledge them and then send them on their way.
I admit, I found it hard to come to terms with perhaps not being able to breastfeed, though I can express. I also felt like we 'lost' the chance to enjoy some of the pregnancy and I worried, still worry, about the operations, the recovery etc. and how many ops our little seed may have to have.
But, we both realised very early on, that this is a temporary and fixable situation. That's not always the case with so many families who find out awful news at their 20 week scan. Yes, it's tough at times, but hubbie and I are strong and I know our seed is too.
Thursday 3 April 2014
An unexpected journey
'1 in 700 babies are born with a cleft', said the screening nurse. 'It's really quite a common defect'.
By March of 2014, I had already had three scans.
The first was a seven week scan to check the viability of my pregnancy. You see, I had already been pregnant and un-pregnant rather quickly back in the November of 2013, so I was delighted to see my little seed's heartbeat pulsing away.
My old anxieties returned around week 9 and I lost any pregnancy symptoms I thought I had. We paid for a private scan just to check and again everything seemed fine.
Still, I panicked and read about missed miscarriages, conditions that they would find at our first 'official' scan, but the time finally came and there was seed lying on her face with her bum in the air (a position she repeats at every other scan we've had). The sonographer measured her and checked for major structural abnormalities. We came away satisfied that everything was on course and set about sharing the good news with our closest friends/family.
We were booked to go away to a friends' wedding abroad the week after our 20 week anomaly scan, so I was glad at the time to be 'getting it out the way' before being able to relax and enjoy the occasion.
We turned up an hour early (not easy with a bursting bladder) before being told they had messed up our appointment. They begrudgingly squeezed us into a 6pm slot and rushed through the necessary checks, but they couldn't see her face or heart valves and her femurs were measuring below the 5th percentile. As usual she was bum up in the air and wouldn't play ball, so the nurse asked us to come back the week after. The wedding was beautiful, but I couldn't let those niggling worries dissipate and although I tried to shut them down, they kept bubbling away.
Cue the anomaly scan part 2 when we arrived home. 'Heart valves are all fine...silence...femurs have dropped below the 3rd percentile...silence...I'm afraid I can see a cleft lip'. At this point hubbie let out a deep guttural sound and I burst into hysterical sobs. I had no idea where either sounds came from, I just know I never want to hear them again. I also remember clutching at the sonographer and not wanting to let go. She held me for a while and then helped me off the table and took us into a counselling room.
The next hour or so passed in a haze. My lasting image was of a plant that needed watering and pale blue walls that seemed to absorb our questions and then silence. I kept thinking of all the tears shed in that tiny room and it made me ache. The screening nurses gave us leaflets/info/cups of tea and the sentence 'It could be more than a cleft, we have to make sure'.
I had another scan that day performed by a senior consultant who confirmed a unilateral cleft lip 'probably on the left side'. She then ran through what else we might be facing because of the other 'soft marker': short femurs. The words 'Edwards syndrome, Downs, Turners'...swam around meaninglessly. I was advised to have amniocentesis the following day, despite my blood tests having showed I had a 1:4600 chance of my baby having one of these syndromes, pretty low by any standards.
The amnio was performed successfully, we watched our little seed recoil from the giant needle being stuck into her amniotic sac. Then began the very long wait until the results, made worse by the fact we had an additional two day wait because of the weekend. We were allowed leave from work and tried to pass the time.
The first set of results came back on the only rainy and stormy day of that week, and during the only hour my husband had left my side. We were lucky...they were clear for Edwards, Downs and Patau. We had to wait an additional two weeks for the remaining results but we were lucky again; they were clear. It may just be the cleft in isolation, she may just be a small baby. We have to have growth scans at 28 and 34 weeks to check.
This was our beginning, a journey we never expected to take, but showed we are stronger than I ever could have imagined. We all like to know we share the same pain sometimes and that we are not alone when we are struggling and I hope that this offers even a little bit of insight or a sense of camaraderie for someone.
We also wanted to start this blog to show our seed how much we love her and we would do anything to keep her safe and happy.
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