When people ask, I often describe the journey as the parent of an extremely premature baby as like being hit by a lorry several times over, without the opportunity to get up and recover in between! I think that’s why you’re affected by the emotion and the trauma of it even some time later when you least expect it- it’s like a delayed shock response to something that you never had the time or the opportunity to process, you were never able to grieve, be sad or build yourself back up again before you were pummelled by the next.
Great Ormond Street Hospital- the place where Finn spent the majority of his early life was a place feared most by parents on the NICU as it was well known that you were only transferred there if something was seriously and life-threateningly wrong. Going back to the NICU days and Finn’s NEC diagnosis; after Finn’s X-Rays at both the Whittington and UCLH showed that NEC and sepsis was highly likely, we were transferred to the NICU of Great Ormond Street Hospital and Finn was placed in an isolation room because he had also contracted CMV (Cytomegalovirus). By now, GOSH was our third hospital, our third set of doctors and nurses, our third set of surroundings to get used to- we were so lucky to be living so close to central London in Hampstead, NW3 which enabled access to such major and world leading hospitals for Finn to receive the best possible care, nevertheless, the constant change was difficult when everything else about our life was agonisingly unfamiliar and uncomfortable.
Once at GOSH Finn’s X-Rays were repeated, strangely these did not corroborate the images sent by the other hospitals- Finn was not showing classic NEC symptoms, to our relief and surprise the decision was made to conservatively manage Finn with antibiotics and monitor his symptoms in the hope that he may spontaneously improve. After five days, a junior doctor accidentally let it slip that Finn was being prepared for major and urgent surgery (without the consultants having formally let us know and discussed it). Finn was deteriorating rather than improving, we were told that we had a few possibilities, either he would be too weak to make it through the surgery (he weighed less than a kilo still at this point), he would lose a large amount of gut or his gut would be too damaged to save him, he would require a stoma (ileostomy) or the surgeons would examine his gut and it may present as healthy and they would simply continue with antibiotics and give him more time. Finn was taken down to surgery that afternoon, we were left helpless and waiting for news for hours, which form it might take we did not know. I happened to have had a birth reflection appointment booked in at UCLH that afternoon with the Consultant Obstetrician who led my care on the Labour Ward. For the sake of occupying our minds we decided to go ahead with the appointment which we hoped might shed some light on the cause of my going into labour at just 23 weeks- bad luck, I was told, such very bad (and so very sad) luck indeed.
Well he made it through surgery, bloated and swollen from transfusions and fluids, the monitors were wild with beeps and shrieks, the team around him working furiously to maintain his SATs, his temperature, his BP. He had a large bandage over his abdomen, it was all I could see really from my vantage point standing back behind the doctors and through the fogged perspex and numerous tubes (far more than he seemed to have before). Finn had undergone a full laperotomy, that is, an incision from the left all the way over to the right side of his torso, and he had another incision below that which housed his stoma. Finn’s gut was ‘inflamed’ we were told, luckily there were no perforations present and no dead gut so the surgeon had not had to remove any, instead they had given Finn an ileostomy to allow the gut from that point downwards, to rest as it would not have anything passing through it. Instead, waste would bypass the rest of the intestinal route and exit through the stoma into a bag on the outside of the abdomen for a short period of time- he ended up with the stoma for 7 weeks in the end and had the reversal surgery at 40 weeks gestation, the day before his due date. In the time that he did have it, I had the constant fear that he would require it forever.
I have talked before about the nature of medical intervention and its contraindications. Finn had made it through the surgery but as I stood back watching him the afternoon that he returned, there was a stillness once the team had exited the room and I could watch him as the ventilator made the rhythmic sound of regular breaths, it was then that a consultant burst in suddenly, said nothing to me and flipped open the incubator window and pulled off the muslin cloth covering the lower part of Finn’s body and legs. He did it with such a sudden urgency that I was alarmed and frightened, I scanned Finn’s body frantically to discover what he was looking for and saw that Finn’s right leg, the entire leg from hipbone to toe was a dark navy blue instead of the pale mottled pink of the rest of him. I immediately demanded to know what was wrong. I was told that for surgery Finn had an arterial line in his femoral artery to accurately monitor his blood pressure; invasive arterial pressure monitoring is used often in intensive care settings particularly with neonates and acutely unwell children – it is particularly necessary in theatre, as in Finn’s case. Although absolutely necessary, the use of arterial lines can lead to serious but very rare complications such as limb ischemia, that is, a restriction in blood supply to the limb as a result from the line placement which can lead to (as I was told) tissue loss. Tissue loss? I repeated, what did he mean by that? What did he mean? I was so overcome with horror I could barely formulate a response and leant, weakly, against the incubator. ‘Do you mean he could lose his leg?’ I asked frankly. ‘Yes’, he replied, ‘But I am sure it won’t happen’. Finn’s capillary refill (CAP refill) time in his right leg was 8 seconds or more…2 seconds is normal. His CAP refill stayed this way for days, the colour did not much improve. Whenever I was not at the hospital I rang the NICU room repeatedly asking if his CAP refill was at all showing signs of improvement. I found myself almost Googling baby prosthesis, considering the implications on Finn’s quality of life, the future, if he (on top of everything else we were faced with) would never learn to walk, to run, to kick a ball. If I was not already at breaking point, this was enough to make me feel like I was quite literally about to implode. Desperately, I urged the doctor to pull the line out, pressure monitoring was still very important so close to surgery, the line was another point of access- it was needed, but so was his leg I argued, pull it out! During this time I had a desperately upsetting and exasperating conversation with a NICU nurse in charge of Finn’s care for the night when I called to ask about his leg. I don’t recall her name, but I remember complaining to the nurse in charge about the way that we had been spoken to and I was assured that said nurse would not be allocated to Finn again. She asked me, when I asked specifically about the state of Finn’s leg, why I wanted to know. Why did I want to know? Without listening to what I was saying, she repeatedly asked me what my worst case scenario was, because he might lose his leg but, as if I didn’t know already, she lectured me, in fact, ranted down the phone to me to the point that I had to hold the phone away from my face and Finn’s father was telling me to hang up, on the potentially dire outcomes for the life of a 24 week gestation premature baby and all of the health, disability and learning implications in life he might face, if he made it at all. I to this day cannot tell you what her intentions must have been at a time where every day was so critical and we had very little hope left to hold onto. We had read the Tommy’s handbook, we had spoken to the doctors, we had spoken to other parents…we knew what we were up against- we just needed her to answer us, (how is his CAP refill? What about his SATs? Is he stable?), so we might just get a few hours sleep before facing it all over again in the morning. By the fourth day of agonisingly waiting, focusing on his limb health whilst he also had a stoma, wasn’t breathing for himself and was recovering from sepsis, we finally saw an improvement. The colour started to come back, the CAP refill quickened and all we could do was wait, even longer, to see how the tissue was affected. Remarkably, only the very tip, the slightest tip of the end of Finn’s big toe turned black, a crusty thick black like charcoal but luckily only the depth of a few thin layers of skin so that when it eventually dropped off, there was no sign or mark that it had even happened. On the subject of odds, of percentages, which I now obsess over, the likelihood of permanent ischemic damage is just 0.09% from an arterial line. Albeit a tiny amount of tissue, Finn managed to fall into yet another impossible statistic- we’re just so lucky that the damage was not more extensive but had that line been left there any longer, who knows how much more of Finn’s leg would have paid the price. The surgery saved him, that’s what we had to hold onto, you give your consent and the doctors do what they have to, because there is no other alternative.
I have an appointment tomorrow with a clinical psychologist for my third session where I explain stories like this one as part of my journey towards making peace with it. It really does help, as does the knowledge of Finn, in the next room tucked up asleep, morphing before our eyes from baby to little boy, finally discovering his love for food a month post wean from the NG tube whilst we were away in Greece, and I can’t help but think (although I can’t say it without touching wood) that he may, may just have turned a bit of a corner.