My Amazing Boys Story

I don’t think I will ever forget the day we had our 20 week scan, all we could think about was finding out whether our little one would be a boy or a girl. After we were told that all the organs were there and that our little boy (so excited!) was growing well we were told that they couldn’t see his face properly and that they would need a second opinion. As soon as someone else entered the scanning room I just knew something wasn’t right. When they started talking about clefts I couldn’t take it in, I remember feeling like I was having an out of body experience. We were asked to wait outside but I just couldn’t go back into a room of parents-to-be all watching us. I didn’t care where they took us; I just wanted to be alone with my husband Mike and our beautiful bump. As soon as we were alone I completely broke down, they must have been able to hear me in the wards upstairs. I just wanted to protect my little boy, I felt completely out of my depth.

We were told we were to go to either Margate or Ashford; I chose Margate as I was born there and knew the hospital a little. We were in a daze and I couldn’t stop crying. Mike was so strong. When we got there we were given a black and white photo of a severe cleft and lots of information about it. I really couldn’t tell you what was said but the image of the cleft baby will always stay with me. I just couldn’t digest the information and the image. We were told that a cleft could indicate all manner of things such as a chromosome problem or a syndrome. They couldn’t tell us whether our baby boy had any of these things, only birth would tell! So I only had several months of worry ahead!

We were contacted by a cleft team within 24 hours. Wendy and Giselle were just lovely, we were told NOT to Google clefts but to only go on the CLAPA website (www.clapa.com). We plucked up the courage to go on and have a look at the images. Our stomachs lurched as we saw some of the before shots, some of the clefts looked so painful and raw (we since learnt that this isn’t the case at all). We clicked on the after shots and held our breath. It was amazing! The work was incredible and it was a comfort to know our little boy would be in the best hands.

The first few weeks of diagnosis were really hard, we went through every single emotion possible, upset, anger (why us?), extreme guilt, happiness etc. My boss signed me off work for a few days as I simply couldn’t function. I remember sitting crying on the kitchen floor, clutching my bump and telling him over and over again how very sorry I was. That memory still brings tears to my eyes today. A cleft lip is not caused, it can be genetic but in our case not, it was simply, one of those things. Although that is a fact it didn’t stop me wondering if I had done too much exercise, did I have a few too many drinks on a girly night out before I knew I was pregnant? The thoughts were endless. The guilt was crushing. We also wondered what pictures we would take of our newborn, would we take any? What kind of people did that make us? Were we that shallow?

I started to drive myself crazy thinking about the chromosomes problems and syndromes the baby could have. By the time I had him, I knew about every chromosome problem and every syndrome known to man, my baby was, in my mind, a vegetable practically and the cleft was so tiny in comparison to what I had read. It was the only thing I could cling to as I needed to be in control and I felt so utterly helpless.

There were good moments of the pregnancy too though, our little boy started kicking me on my 30th birthday and it was just magical. We would play him music and he would dance about in my belly. The cleft team secured a 3D scan with Mr Penman at the Spire Alexander Hospital and just seeing his little face was just so wonderful. We were so delighted we paid for a 2nd scan with Mr Penman when he was bigger. We knew exactly what kind of cleft he would have and we could see our little man growing.  We were totally in love. Our baby boy would have a bilateral cleft lip which means that it would affect both sides of his mouth and it was likely his palate would be affected also. Cleft means ‘split’ or ‘separation’. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary. The condition affects approximately 1 in every seven hundred babies born in the UK and is the most common congenital craniofacial anomaly.

 By the third trimester I had had 13 scans and it was suggested he would be a huge baby of at least 10lbs; I was still feeling very out of control and clung to my research into chromosomes and syndromes. I had no idea what to expect. I knew that our baby would need to see the paediatrician and his cleft nurses in order to diagnose and work on the best way to feed him. It was unlikely I would be able to breastfeed as he would not have the ability to suck. The team provided us with ‘squeezy bottles’ or MAM bottles that some people would use for premature babies. I was also provided with a monster of a machine to help me express and a lovely lady called Hannah was my expressing mentor and was a big support.We were very lucky during pregnancy that we had an entire team behind us, the cleft nurses, the surgeon, the psychologist Kate were amazing and many others who were there to support us. Friends and family were incredible and couldn’t do enough for us. I now feel really lucky we had and continue to have such support!

When we were thinking about birth plans I knew right away that I wanted a c-section. There was no medical reason for this (except little man was likely to be very large). I felt so totally out of control and I began to worry that I would go into labour when the people and the team he needed would not be available. A c-section was agreed and I began to relax a little.

The big day finally came around, Mike and I hardly slept a wink we were so nervous and excited to meet him. My Mum drove us to Margate and we booked in like a hotel! Everyone was very calm and happy and that is exactly the experience I had wanted. We were 2nd in and my consultant was on hand to supervise. The radio was on and by the time Olly Murs and Gwen Stefani had sung their songs, Jack Flynn had made his way into the world! He got a 9 on the APGAR scale and our huge son (a whopping 6lb 10oz after all that!) was laid next to me. It was such a beautiful moment. Mike and Jack were taken into another room and they had a chance for cuddles. I can honestly say I didn’t even notice the cleft, it was such a tiny part of him and he was gorgeous! I spent the whole day beaming and we took thousands of photos! The care at Margate was wonderful and everything was smooth. The nurses sorted a private room for me and they looked after Jack at night so I could rest.

 Jack was fed by cup by the nurses and they showed us how to do it, Mike got it quicker than me but I soon caught on. The cleft nurses signed him off to go on the bottles and he took to them like a dream! Cleft or no cleft our Jack was going to get that milk into him! Our boy was hungry!

All of a sudden we were home and I soon realised that I had spent the whole time thinking about the cleft and very little time on thinking about the baby! And that was exactly was Jack was! A loud, adorable newborn! It knocked us for six a bit with the lack of sleep, getting to grips with nappies, even how to pass him from one person to another!! We learnt how to become parents.

Jack was amazing and when we got the letter giving us the date for his first operation it was a real mixture of happiness and sadness. It may sound strange but the thought of someone changing his little face was really upsetting to us. We loved his wide cheeky smile and part of us wanted to run off into the hills and live in a bubble. The operation would involve peeling back his lip and pulling the layers of muscles together across the front, working on his gum line and bringing some of the muscles together in his palate. The thought was just horrendous. We had met the surgeon Norma while we were pregnant and while Jack was small so we knew the team were excellent though.

The psychologist and the nurses prepared us to take Jack to London for his op. They told us to be shocked/upset when we saw him post op because his little face would be so different and he would be very grizzly. We tried to be as positive as possible but we were tense and scared. The day before the op we walked around London and somehow it felt like our last day with Jack. We were so very frightened. We booked into the ward very early in the morning, we had to starve Jack and he was less than pleased but at least he would be first in. We were shaking like leaves when we took him down to the anaesthetic room. Mike held him and I stood there like a soldier trying not to break down. He fought the anaesthetic and as his little body went limp we both nearly lost it as we handed him over. We were told the best thing to do was leave the hospital. It felt so odd leaving without him and knowing that our tiny son was under the knife. In a daze we found a café and sat there for hours trying to make small talk and distract ourselves. 4 and a half hours later we got the call. Jack was in recovery.  The journey to that room seemed to be an eternity. When we arrived it was such a shock to see his face, his wide smile was gone and he was all swollen and bruised. We soon realised as well that something was not quite right. Jack had not coped well with the pain and he had had masses of morphine, there was a worry that he had had too much morphine and he was very dozy. He was moaning and he was covered in blood. They asked us to give him a bottle but he let out a piercing scream and the teat was again covered in blood. I just felt like bursting into tears. If I could have swapped places with him in that moment I would have done it in a heartbeat. It took 2 days for Jack to improve; we were simply exhausted emotionally and physically. I called my Mum for help and we slept in shifts just to be able to keep going.

Day by day Jack got a little bit better and his scars began to fade. We so missed his old face but we loved his new one as well. In the hospital it felt like he would never smile again but slowly his cheeky ways started to shine through and all of a sudden he was back to his old self again! We were delighted.

We got back into our routine again, baby groups, walks, playing etc. Jack hit all his milestones and it became clear that he was an absolute fighter and no-one was going to stop him! Determined, fun and wilful, we were and are just so so proud of him!

We got the letter for his 2nd op in November; it was scheduled for 10 days before Christmas. We were gutted. I wanted to cancel Christmas; it seemed so unfair that his first Christmas would be ruined because of another operation. This one was for the palate and would bring the remainder of his palate to a close. I wasn’t going to be caught out this time, I enlisted the help of my Mum and so Mike, myself and my Mum took Jack up to London again in December. We were very lucky and were given a heavy discount at a 5* hotel next door through a referral from the cleft team. It sounds odd but it was lovely to have a bit of luxury when we knew what we were facing. I was prepared for our little boy to go into complete meltdown again and I prepared with military precision. Again, I know it might sound odd but the first op was so traumatic I wanted to have everything in place.

Taking Jack to have his anaesthetic was no easier the 2nd time around, as Mike held him I stood singing Hickory Dickory Dock with tears streaming down my face. We all wondered round in a daze for hours just waiting.

Again, Jack had to have extra morphine and I found myself thinking that the pattern was familiar and that we were to expect a very distressed little boy. 12 hours post op they decided to remove the morphine drip. Mike and I protested because of the first time around but amazingly our little fighter reached out for food. We were told to take his favourites, it didn’t matter what just whatever he would eat. Like a bird he tentatively ate a spoonful of rice pudding. Then more and more and more. We ran to get more cans!!!! 20 hours post op they released him to go home and 48 hours post op you wouldn’t have known he had just had a major operation! We were stunned!

Jack was spoiled rotten by friends and family for his first Christmas. Everyone felt so proud of his achievements!

I found I had a real dip after Christmas as it felt like I had been fighting right along with Jack for so long, we decided to  ‘run away from home’ as a little family. We jumped on a train and had a few days in our bubble just recuperating. It felt like a breath of fresh air.

Jack is a very happy, very cheeky little chappy with bags of personality. He is so strong and we are so lucky and proud to be his parents! Mike has put in a request for several more Jacks! There is not a thing we would ever change about him. He is likely to need two more operations, one when he is about three to repair a tiny hole in his gum line and one when he is about nine to strengthen his gum. I wanted to tell our story because someone you know may be expecting a cleft baby or have a cleft baby. Alternatively there may have been another anomaly detected. Jack is proof that it will all be okay and that the surgeons will simply finish off what nature couldn’t.

Love from

The Keeling-Smiths x

 

 

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One thought on “My Amazing Boys Story

  1. Oh Sarah, you’ve written your experience so beautifully here. Jack is an absolute credit to you and Mike and he’s a gorgeous little boy. Anyone going through the same experience will be able to draw a lot of strength from your blog – well done. Jill xx

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