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I was getting anxious when it was June and baby had not arrived. By the 6th I had to go for routine monitoring because I was so past my due date and within a few hours I was in theatre and my baby had been rushed off to NICU. When I was able to go and see her I struggled to comprehend the severity of the situation. I was told she had persistent pulmonary hypertension and severe meconium aspiration, only they don't know which one caused the other. These were all words to me, all I knew was that my baby was 'dangerously ill' in the doctors own words. We consequently found out that because she was so late it is likely that her digestive system had matured and therefore she had opened her bowels whilst in the womb and inhaled said contents. This, in turn, put her body under an enormous amount of stress and created problems regarding enough blood being able to pass through her tiny heart. Any parent who has had a similar experience will be able to confirm that there are simply no words to describe the feeling that you get once you are told that all the options have been exhausted (nitric oxide, oscillation etc). Well, all but one. Her only chance of survival depended solely on receiving a treatment we were at the time unfamiliar with called ECMO. All we managed to find out was that it was invasive and was known as a "last resort" treatment. 

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Just realised I describe how wonderful ECMO is without explaining WHAT it is, so here goes... ECMO (and I probably won't do it justice) involves 2 tubes, the width of a biro, inserted into the neck and going straight into the heart. One takes out the deoxygenated blood, where it is oxygenated externally from the body and the other puts the now oxygenated blood back in. This allows the lungs to have a rest (and the meconium to be cleared out). As you can imagine, it is VERY scary to watch, but especially on a brand new baby. I have put a picture of Penelope whilst she was on ECMO below.

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We were so lucky that the ECMO team from Leicester were able to come and perform the initial part of the procedure and then transfer our brand-new newborn to Leicester for the remainder of the ECMO, whilst we waited and followed behind. 

Penelope's life was saved by the fast acting of the doctors and the quick response from Leicester. It was utterly unbelievable how much your entire life can be turned upside down so quickly and then back again, at least in part, due to a handful of individuals that were able to make your worst nightmare just a little bearable by offering reassurance (amongst the many other things they do). We were so well accommodated for in Leicester and the staff were beyond knowledgeable and friendly too. However, Penelope's story does not end there. She was helicoptered back to where she started, came off the ventilator and was recovering rather well until she had a problem maintaining a safe blood sugar level on her own without the help of a dextrose drip. She had a multitude of tests done (which took what felt like a lifetime to get the results back) and it was confirmed that she had a very rare condition called Congenital Hyperinsulinism (in effect this is the opposite of diabetes whereby the body produces too much insulin) that roughly affects one in 50,000 newborns worldwide and was not linked to her need for ECMO! Luckily, she responded very well to her medication and has only had a couple of 'hypos' (although these are extremely dangerous low blood sugar episodes). I know that ECMO babies are special, so this makes Penelope one in a million. And she may need more aftercare and follow up but we are just so lucky that she is here. Everyday we are thankful for ECMO, but especially Glenfield, Heart Link and all the staff. We will be raising money for Heartlink at Penelope's Naming Day party at the beginning of November. 

By Gianna and Lee Pickup.

Text PPIC66 £ amount to 70070

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