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Gianna's story

11 July 2015

Towards the end of pregnancy, thoughts are preoccupied with delivery. Will it hurt? What pain relief will I need? Even, how will I know that labour has started? But not once did it cross my mind that my baby might be poorly.

On the tenth day past my due date I lost a little fluid. I had planned on having my baby at a midwife led unit as I was considered low risk, so I went in and they confirmed that it was amniotic fluid. I was sent home and told to keep checking my temperature and rest up until contractions started. I had a few contractions on and off over night so in the morning I went back and as labour had not progressed I was sent to the hospital.

The baby’s heart rate was poor and I had a lot of meconium (newborn faeces) present, so the doctors said I would need an emergency caesarean section, and fast. My daughter, Penelope, arrived half an hour later. The room was full of people but it seemed dreadfully silent and we hadn't heard her cry. I, however, had begun to cry and as I looked at my husband we heard the faintest of whimpers from Penelope. I caught a glimpse of her as she was wheeled out because she needed help breathing.

Whilst I was in recovery my husband had been to see her in NICU and brought me a picture. She was perfect but she was seriously ill. She was on 100 per cent oxygen and couldn't breathe on her own, she had also ingested a lot of the meconium and had severe meconium aspiration, as well as persistent pulmonary hypertension (low oxygen in bloodstream) as a result. I managed to get myself into a wheelchair and go and see her. By this point she was on an oscillator, which was just petrifying to see -my brand new, delicate baby was shaking away.

We sat there for hours watching her sats (oxygen levels in blood), they were going down instead of up. Nitric oxide is often used to treat it, but that didn't work either. We sat with her for ten hours when the doctor asked to speak to us. They had exhausted all the options at our local NICU and there was nothing more they could do now. He mentioned something called ECMO (extra corporeal membrane oxygenation), but there are only a few places in the country that do it. The closest place to us was three and a half hours away but luckily for us there was a bed and Penelope met all the criteria to qualify for it.

ECMO is basically a lung bypass. Blood is taken out of the heart by a tube in the neck and the oxygen is added to it outside of the body, and then the blood is returned, doing the lung’s job, and allowing the meconium to be cleared out.

The team came the following day, put Penelope on ECMO and took her to the hospital in an ambulance where she stayed on ECMO for 36 hours. My husband followed her there and I was discharged the following day and met them both there, and although phenomenal to watch, it was easily the most terrifying thing I have ever witnessed in my life. She was then brought back to our local NICU in a helicopter! They even had teeny tiny ear defenders for a newborn! She was already proving to be a fighter. She was off the ventilator 24 hours later, but our NICU journey was nowhere near its end.

She was breathing on her own but was unable to maintain a safe blood sugar level without a high concentration of dextrose. It took a couple of weeks to get the results back from the myriad of tests performed. It transpired to be something quite rare we were dealing with. She has congenital hyperinsulinism which means that she produces too much insulin, like the opposite of diabetes, causing dangerously low blood sugar. This was completely unrelated to her breathing difficulties she initially faced.

Even though she was admitted to NICU with what was a relatively common newborn problem for full term babies (albeit she had it to the extreme, the most severe case our local NICU had seen), the fact that we were now dealing a diagnosis for something much more complicated was particularly difficult. I can certainly sympathise with any parent whose child is in NICU with a rare, genetic condition not picked up on during pregnancy and waiting for the results of test after test. Perhaps the most worrying thing of all was not knowing when we would be able to bring our baby home.

Once she was on her medication and beginning to stabilise there was light at the end of the tunnel. However, from there we had difficulty "teaching" her how to feed as she had previously been tube fed whilst we awaited a diagnosis. This felt like the most tedious part of our stay in NICU. She had reflux and ended up on even more medications, she was also visited by a speech and language therapist and a dietician. It seemed that she could not keep a bottle down, and worse, when she was sick her blood sugars would drop. This prolonged our stay in NICU a few times.

After six weeks and two days, a very long discharge planning meeting and two nights 'rooming in', we were able to take Penelope home. She was still being tube fed, but we were both shown how to use it properly. She was off it in no time when we brought her home and could practice feeds round the clock!

During the six weeks we spent in NICU, I found comfort from the Bliss magazines, and much of what was not covered in our discharge planning meeting I found in the Bliss family handbook, which was especially helpful. I think that even though it is a great shock delivering a baby prematurely, it is just as much of an unpleasant surprise having a poorly full term baby that needs neonatal intensive care.

What I would like to let any parents in a similar situation know should they be reading this, is that it really does get easier. And once you can accept that taking your baby home will happen when they are ready, it can even become enjoyable! The nurses are utterly fabulous and are of great comfort - what a job to do! We documented and enjoyed some of Penelope's "firsts" while we were in hospital as if we were at home, but had the advantage of a helping hand. It is a place full of ups and downs and my advice would be to take solace where you can, even if it is reading this for five minutes while your new baby takes a nap. And, most of all, congratulations on your new arrival, from a parent of a 'NICU grad'.

If you'd like to read more about Penelope, you can visit Gianna's blog here

If you have been affected by any of the issues in this post and need support, please ring our helpline on 0500 618 140 to speak to one of our qualified volunteers. 

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