Cleft Journey.... by Eimhear

This idea to blog our Cleft Journey was born from the loneliness we felt when trying to find out about a cleft journey in Hong Kong.  We had been given access for what felt like this exclusive club but were randomly knocking on doors around Hong Kong to see which one would let us in.  It felt only obvious to share our journey so that you the reader who may have been diagnosed today will know, who is who in HK, where to find them and how the system works. 

So, I am Eimhear (pronounced ee - mer),  an Irish Cailín living in Hong Kong, married to a George Clooney look a like Northern Irish Man (aren't I the lucky girl!) and Mom of three amazing energetic, creative boys.  Two I have met, my third boy will be making his appearance soon however we know so much about our wee Man already, I know how incredible he is going to be. This pregnancy was never going to be a 'normal' pregnancy.  On our journey to expand our family we have experienced the loss of 5 babies which would need a whole other blog to explain that journey.  However, having had 2 normal pregnancies, I know what it is to expect from a 'normal' scan.  
Our pregnancy journey for our 8th pregnancy started off with an immediate threatened miscarriage.  I was put on strict bed rest for 2 months.  Not too bad you may think!  For many years I would wish to lay in bed, have the time to read those books on my wish list, catch up on my 'to do' list, watch that box set. So here I am, having been granted this time and I can't even stay focused on a magazine article.  Even arriving for my doctors appointments and having the wand placed on my tummy and to see the flashing heartbeat of my little baby only gave me relief for the briefest of moments for we knew that we still had a mountain to climb.  The big challenge was to get to 12 weeks and we did it.  I was so proud of my little man.  We had a scan at 11AM and at 11PM I was boarding a plane to fly to Ireland with my 2 boys and bump to celebrate a family birthday.  The relief was short-lived - 13 weeks pregnant - fell ill with severe flu.  Terrified for my baby I don't think I knew the consequences until I returned to Hong Kong 7 weeks later.  The professor who is in charge of my care in Queen Mary Hospital wanted to know the strand of virus I had.  This did make me smile, for I was diagnosed in my local GP surgery in the West of Ireland where you are told you have a virus, go to bed for a week.  Not like HK where investigations into specific strands are done. 

The following day I was scanned in the high risk unit with an emphasis  on the fact that I had a flu.  I was not in the slightest bit worried as only a few days earlier our private OBGYN Dr Edmund Hon had conducted a 20 weeks scan and had given us the report all parents want to hear - all was well.  He mentioned that when we were having our QM scan to let them know that he couldn't see the baby's face - I didn't think anything of it.  So as I lay on the scanning bed, I felt very confident that the report would be positive - why wouldn't it?!  The atmosphere is the room of the QMH consultant is a world away from what we are used to with Dr Hon.  Dr Hon talks his way through the visit explaining everything clearly - not the style of the QM consultant.   The wand touched my stomach and within minutes I knew the this was no normal scan - one would think that when your doctor has been scanning your Baby's heart for 17 minutes.  I could feel a tear release from the corner of my eye as I realised that there must be a hole in the heart.  There is pretty much no communication and when I asked her what she was looking for she asked me to be patient, quiet and let her do her job!  She moved on with the scan and at one stage when I looked at the scan I asked if that was a cleft lip - she replied "Yes"!  My initial thought was - thank god, as least a cleft lip can be repaired easily.  Nearly an hour later the scan finished bar being told to be quiet and Yes to the cleft lip question we had not had any comments from her.  I sat up and she started listing off ailments that she had seen on the scan. To mention a few, no stomach or abnormal tiny bubble, duplex kidney, shortened femur, cleft lip +/- palate - putting all these together she said that she believed our Baby was very sick.  She offered me a termination - I froze, my eyes widened almost popping out of my head.  I asked if it was that serious - her reply was that everything would indicate that our baby was very sick and may not survive.  Chromosomal abnormalities were mentioned.  She offered an amniocentesis which we accepted as I thought if my Baby will not be able to survive outside utero I want to know.  I never had amnio before and fearing that I was burst into tears which would cause the needle to enter my baby I had to export myself mentally by playing a camogie game like I used to when I was teenager. 

At home, I shed too many tears to count.  I initially thought had I pushed nature.  This was my 8th pregnancy - should I have given up long before.  Mark had the iPad out looking up some of the Chromosomal abnormalities mentioned which confirmed that Babies with such abnormalities would not survive outside the womb.  We got on to Dr Edmund Hon - how could a matter of days produce such different results.  He was, as always, incredible in talking sense and making sense of such a report.  Always the professional, he was very careful on how he disagreed with the QMH scan but he was very confident that he saw a healthy baby and that I was carrying a healthy baby.  He was aware that we weren't worried about the cleft and he is from the school that a cleft is completely reversible with surgery.  All we could do is wait and see what the results would show.  From the moment we left her room, Mark was incredibly confident in our son.  He immediately stated that he didn't believe her findings.  He saw his Baby kick at 7 weeks and knew from that moment what a strong baby this would be.  He believed from the very beginning that she was an alarmist with cold clinical bedside manners and had decided that he was going to fall on the factual, humanist side that was Edmund Hon.  Even when he would return from work and find me curled up in a ball on the bed crying, he would anxiously ask what was wrong - he genuinely had forgotten and put it out of his head what she had told us and completely moved on.  I wish I had his confidence! 

A few days after the scan Mark and I were invited back to take part in an array test which tests the genes within the chromosomes.  We gave blood to an incredible nurse who was so gently and quietly mentioned to us, cleft lips are easily repaired.  This nurse would prove to be an angel to us because as our baby's results popped up on the screen, she would phone me off the record to inform me.  We even met with the consultant in the hospital who told us the results were not back yet, however, we had gotten a call from the nurse days earlier to confirm all results were clear.  Fearing that we may get her in trouble we zipped our lips and confirmed we were happy to wait.....  8 days later the doctor confirmed that we were carrying a healthy baby.  There was never any reference to her scaring the bejaysus out of us that our baby was not going to live. 

Let me update you on some of the findings - the no stomach/small stomach was in fact our baby's empty stomach, he just hadn't eaten before the scan!  The shortened femur was because of the inaccurate due date put in the system throwing all of the babies measurements out by weeks.  We were reassured that dilation of a kidney in utero is extremely common and because the renal system was working - we had in fact had an amnio which is essentially withdrawing baby's urine from the womb - something that would not have happened if the renal system was not working - this was becoming something that we should not worry about until after the baby is born.
So People, the big lesson for today is, always, ALWAYS get a second opinion and even a third opinion if you can.