A HEALTHY BABY

wordswithmrsh - 17 Jun 16

Feeling reflective…….

Trust me, at your 20 week scan when you hear the words ‘I think there might be a problem with the babies heart,’ you don’t feel like thanking the Sonographer. You hope they are wrong, you cry because you fear they are right, you can’t remember or focus on anything else they might have said. You leave with your little black and white photo of a tiny new being that you are now so terrified for you want to vomit. Then scream. Then runaway….

Then you wait. You wait for the referral to the specialist who is going to be able to review and explain it all properly. You start digging into family history of heart complaints, only to find there are none. Then you curse yourself for being so stressed, that day you forgot to take your vitamins or those drinks you had before you took your pregnancy test and ask why this had to happen to you. To your baby. The reality of course being, why not? Sometimes these things are just random acts by Mother Nature, with no rhyme or reason. You feel like a teenage delinquent when you repeatedly say it’s just not fair. Because it’s not, but it is happening.

You try to carry on with the fun of pregnancy, choosing clothes, talking about names, wondering who they will look like but you don’t for one moment forget that there is something wrong. You struggle to allow yourself to get too excited because even with your well meaning family, friends and colleagues (of whom the majority are not medical professionals) telling you it will be fine, your reality is that it just might not be. The pregnancy should have been fine, the baby should have been fine, it is already not fine.

You meet with the specialist who explains the diagnosis and what this means (Coarctation of the Aorta in our case). You fail to heed their warning about not searching for information on line but you only do it once and then NEVER EVER again. You start telling your loved ones that sometime after the baby is born he will need surgery. You quickly realise this is better done over the phone to avoid THAT look as you deliver the news. That look that happens for a split second before they begin to reassure you it’s all going to be okay. The Holy Shit, what do I say, that is scary, it must be bad look. Now knowing the nature of the condition and how it can go undetected so easily, you agree with others when you discuss how lucky you are it has been caught – you feel anything but.

You spend the rest of pregnancy attending numerous appointments and scans. You get very savvy to Doctor lingo and writing down questions and information. Your birth plan is what the Doctors say it is. You go with it.

You go into labour with an added level of fear and anxiety. You discuss with your partner that whatever happens at the birth, once baby arrives he is not to leave their side. At all. There are more doctors and midwives present and circling about at the birth than people who attended your leaving do at work. It’s reassuring. The knowledge that everybody is ready makes you feel safe. The ambulance put on standby in case it’s the worse case scenario and your baby needs an immediate transfer for surgery, makes you wish you could keep him inside you forever.

Your baby arrives, the ambulance stands down. Immediate checks show that baby is okay for now. He will need to go to SCBU for monitoring. A week later you can take your baby home, but frequent monitoring is still required as the narrowing of the aorta is continuing. However, it’s slower than expected so every day baby is doing okay is a day he is getting stronger for the surgery – that is still going to happen. You get home, and for a couple of glorious weeks you enjoy your baby. However, you can see he is becoming unwell – his feeding slows down, his skin starts to mottle (think corned beef) and at just over 5 weeks old the doctors say it’s time for surgery. Before he gets too sick.

You walk about like a wild eyed maniac. You tell everyone the news – the Holy Shit look lasts for much longer than a split second. You start praying to any God you think might be listening, even though if they are, this is the first time you have called so they probably don’t recognise your voice. You remember that it is science that has got your baby this far and to listen carefully as every detail of what is coming next is explained. (But you keep up with the prayers – just in case).

You live your worst nightmare as you watch your 6 week old baby be given anesthetic and fall asleep. There are no words. You walk about and wonder what you are meant to do while you wait for a call to say the surgery is over. Your phone rings. You go to see your baby in the recovery ward – tubes and machines everywhere. You cannot relax yet. You are sitting by their bed when the alarms start sounding and you are hustled outside…. A few moments later a nurse comes out looking relieved and tells you it’s okay to come back in. You are barely able to register what is happening.

Another week later you go home. You are 7 weeks post birth with your first baby who is now recovering from heart surgery. You are exhausted. Then your baby smiles at you and you start finally believing it is going to be okay…. You wait 5 years before having another child because of the trauma of it all. Baby number 2 is fine. Baby number 3 is fine.

Our baby is now rapidly coming on for 9. Apart from a couple of scars and yearly day out from school for check ups, you would never know this was his start. He knows he has an extra special heart but only because of the appointments and scars. He remembers nothing, which in itself is a blessing. Now, looking back on the whole time we can see and say we were lucky and really feel it. Words like appreciative and grateful don’t seem big enough to describe how we feel about what so many did for us and our boy.  

Nearly 9 years on, why write this now? Because we have our babies, because there will be no more. Because the long long shadow that this cast over our decision to have more children has finally gone. Because if anyone is reading this and going through something similar – you will know (HANG IN THERE). Because there are the most remarkable professionals out there saving lives and charities that are supporting them and they need a BIG shout out. Because when the kids are driving me bonkers I am always reminded that a healthy baby really is a tiny everyday miracle.

And to the Sonographer we saw 9 years ago at our 20 week scan – thank you x

wordswithmrsh

Mum of fabulous children, wife to one very patient husband. My blogs are about anything that has popped into my head as it occurs to me. I have aspirations to write more, that are slowly turning into reality. A lover of the simple things in life - good friends, good food, good wine and of course family.

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