How it all started

Photo0042I had a generally very easy pregnancy. I felt more sick this time, and tired, and everyone was convinced I was carrying a girl, but apart from that pretty much like my first pregnancy four years earlier. I had great scans, which all looked fine, and my early blood test came back as low risk for Downs and for Edwards and Pattaus- I know that they test for both at our local hospital as by a bizarre coincidence I was told I had a higher risk from my results with my son (which turned out to be a false alarm thankfully). As a result however, I had heard of the conditions having googled them (and scared myself silly) 4 years earlier. A routine scan fairly late on showed that my fluid levels were a little high, so they called me back a month later to scan again. When they had increased a bit the consultant was pretty sure there was nothing to worry about, although a blood test had showed that I had antibodies for CMV (a serious virus if you have it when pregnant) so we were a little bit concerned about that. At about 37 weeks with high fluid levels and a baby who was in an unstable lie I was admitted to hospital with a c-section planned for just over 38 weeks if baby didn’t move into the head down position. When Isabel was born by c-section, she was obviously very small, pale and looked quite floppy. They immediately rushed her to the back of the room and discovered that she had oesophageal atresia – her oesophagus hadn’t joined up with her stomach, which was the cause of the high fluid levels. They whisked her away to the neonatal unit in an incubator, having not been able to hold her or even see her properly. It was a pretty rough day, which is not one to re-live in detail, but they planned to send us up to the regional NICU to operate the following day. They identified that she had a tracheal oesophageal fistula (TOF) which could be surgically repaired. They were also really worried that she might have a heart condition that would cause a problem once the duct between her lungs and her heart had closed which could be a few days after birth. They did mention about genetic testing – I remember two consultants saying they were sure she didn’t have Downs, as if that was the worst that it could have been. The next day we were transferred up to the NICU. I was discharged 24 hours after my c-section so I could travel up with Bill (my husband) behind the ambulance. Fortunately my mum and dad had come up to look after our son while I had gone into hospital and stayed with him so that he didn’t need to come up to the neonatal unit which was nearly 2 hours away. At the regional NICU we didn’t have a great experience especially at first. The nursing staff were great, but it was virtually impossible to get a consultant to talk to us – it was like they weren’t at all interested until the genetic testing was done. One surgical registrar talked about her “dysmorphic features” – our beautiful little girl, who even then was bright eyed and interested in the world. On the evening of Friday November 5th, 2010, when Isabel was only 3 days old, we were told the earth shattering news that Isabel had Edward’s syndrome. I can still hear the sound of my own screams. It was surreal in many ways, fireworks going off all round us and never had we felt so disconnected to the world. They explained that it meant she had an extra chromosome, and that she was unlikely to live more than a few days or weeks at best. I was so shocked as having looked it up when we had the scare with our son it didn’t fit with the lovely bright eyed little girl in the next room. We were given the choice about whether to operate or not – a choice which still horrifies me – it was like they were saying she didn’t have a right to have every chance of a life. We had no doubt at all about what the right thing to do was, and fortunately a wonderful surgeon was on that weekend who was really positive. We were so worried about our son too- what was he thinking about it all, his world had been turned upside down. What would we tell him? How would he cope if the worst happened? We told all our family and friends that we had really bad news that Isabel had a serious underlying condition – text is a great thing at times like this as the thought of actually speaking to everyone was just too much. It was hard enough just telling our parents. We didn’t tell most people what the name of her condition was – I think in part because we didn’t want everyone looking it up and finding really grim stories, and I think in part we felt a bit guilty and ashamed that we hadn’t been able to have the “normal” healthy baby that everyone expects when they are expecting a baby. Those emotions don’t seem at all logical now, but that’s the thing with emotions and feelings. Isabel’s operation went really well although of course we were on tenterhooks, and afterwards she was kept on morphine and a ventilator as a standard part of the procedure. Only a few days later, when she was recovering really well, the consultant we had been allocated asked to meet us, and basically told us that if Isabel were to have a problem “it would not be appropriate to resuscitate her”. We were furious about this – no consultation, no attempt to involve us, just his decision that he would withhold treatment. To make it worse, the registrar also at the meeting, sensing that it was not going too well, leant across and said that what our consultant was trying to say was that if anything happened it was “Isabel’s way of telling us that she wanted to die”. Well, we already knew our little fighter was trying to do everything NOT to die – we still cannot believe we were dealt with so insensitively and inappropriately. Suffice to say a strongly worded letter later and by the next day it was all a “misunderstanding” and no more was said on the matter. The consultant remained very dismissive of our attempts to feed Isabel and told us she was unlikely to be able to co-ordinate her sucking and swallowing, and that it would wear her out. Meanwhile the nurses were treating her like any other TOF repair baby, gradually increasing her feeds and encouraging us to feed her by bottle and top up with the nasogastric tube. One even encouraged me to try breastfeeding and Isabel did quite well, but I just don’t think I had the confidence to ride through the difficult learning stage at the start. To be honest, once she really got going with a bottle she just got cross about trying to breastfeed, so I compromised and expressed milk to feed her (no mean feat!). And we were so cross about the consultant’s dismissive treatment of her and us that we were quite determined to feed her, even when it was slow at first. The nurses were also great in getting us to change her nappies, and to give her a bath, and to normalise things as much as possible. When Isabel was 2 weeks old she was well enough to be transferred back to our local hospital, which was such a relief – it had been so hard in many ways to be in the NICU, especially to be so far away from our son. My mum and dad had been brilliant and had looked after him to keep his life as normal as possible, but we missed him awfully, and also felt terribly guilty about being away. Sometimes I look back on it all and wonder how I didn’t end up with post-natal depression, although it did seem like I was on the edge of it at times. It is definitely an area where more could be done to support new parents in neonatal units – our midwife didn’t even ring us, and nobody from the local post natal ward made contact whilst we were away, although our lovely GP did ring to check how we all were and offer his support. We had a bit of a scare on our way back as Isabel had had a de-sat towards the end of her ambulance journey, but the next 2 weeks went pretty smoothly, and suddenly we were at Isabel’s discharge planning meeting. It was such a transition – having had a number of medical staff telling us how she had days or weeks at best, and each with their own version of how she was going to die, suddenly we had a whole posse of people talking about the future like there was one. When we took Isabel home for the first time we were so nervous. We had an apnoea monitor permanently attached to her tummy, and were terrified even about the journey home. We came home on 2nd December, and I remember thinking “please don’t die on Harry’s birthday” (just before Christmas) and “please don’t die at Christmas”. Every day in those early days I was scared it would happen that day.

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One thought on “How it all started

  1. Living by and for the day is a hard-earned skill but essential if you are coping with tumultuous emotions. I found reading your beautifully written accounts very moving. I long to look at a photo of my son, sadly no longer here, and be able to be positive about all he achieved in his life and push my negative thoughts into the background. I am going to try harder!

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