“And do you have a medical background, are you a nurse?” the consultant asked kindly.
“Er… no, I’ve just spent over 5 months in hospital with my baby.”
This conversation came after Alec had been at home for a few weeks and I’d had to take him to A and E after an accident. The consultant wanted to hear a bit more about him before discussing what had happened, and I launched full pelt into Alec’s medical history.
I realise I’ve become almost an expert in things that, prior to March 5th 2016, I knew absolutely nothing about. As the months went on, we became more confident and gained more understanding of medical conditions and terminology. Here I’m going to go round the body and explain about some of the things that we had to quickly learn about.
Premature babies are at very high risk of brain bleeds, which we were warned about on the first day Alec was with us. That night, while nurse Felicity cared for him, he suffered what was described by the consultant the next day as a “significant, severe” brain haemorrhage; as time went on it became known to us as a Grade IV IVH, Grade IV meaning the most severe on the scale (they go from 1-4), and IVH standing for intra-ventricular haemorrhage. This was likely to cause severe damage and therefore disability. As the bleed was on the ventricles, this could inhibit the flow of fluid around his brain, causing further damage. The bleeds correct eventually on their own, but they’ve left the damage behind. Alec had regular head circumference measurements and brain scans to check how the bleed was resolving and whether it was causing any fluid build up (hydrocephalus). As time went on, the consultants were happy that the bleed had resolved and there were no further concerns from it. Alec was described as being at “very high risk of having problems”, but it would be very unlikely that that bleed would cause any further damage. The most difficult thing about this kind of prognosis is the unknown… scans and images don’t really tell the story of how the baby will actually be, so we wait, seeing how he is, when he reaches milestones etc. We are just enjoying him as he is!
Alec’s heart began beating 5 minutes after he was born; the paediatric team had begun working on him as soon as he was delivered. I lost count of how many echocardiograms (ultrasound scans on the heart) Alec had during those early weeks. He had a PDA (Patent Ductus Arteriosis). Essentially, a hole in the heart. It’s to do with the blood flow. When a baby is in the womb there is a little hole that lets blood go to the lungs, as well as the other organs. This usually closes when they are born, but, for premature babies, the hole doesn’t always shut, meaning that some of the blood that should be pumped round the rest of the body gets back to the lungs and puts pressure on them (I think). Dr Simpson explained it very well and drew a diagram on a paper towel for us. The usual treatment to close a PDA is a course of ibuprofen, and, if that doesn’t work, a trip to Great Ormond Street Hospital to close it surgically. Initially Alec responded to the ibuprofen and it closed, which was such a relief. He then became very poorly with his lungs and it turned out that the PDA had reopened. The trouble with the different treatments is that they can have a knock-on effect elsewhere, and the consultants wouldn’t feel able to treat it unless he was healthy in other areas, so the PDA had to be left alone whilst they dealt with first the lungs, and then a very poorly tummy. A few weeks later, it transpired that Alec’s PDA had closed of its own accord!
The organs that caused us the most worry. Although I’d had one steroid injection before Alec arrived, the complete dose is 2 jabs, most effective 24 hours before the baby is born. So the one injection I had probably didn’t have much effect on Alec’s lungs. It was 30 minutes after birth that he first let out a little cry. He was ventilated, with a machine doing all the breaths for him. I don’t think I really grasped that this was life support until a few days into life in the NICU, when I realised how much the doctors wanted to get him off the ventilator. After a week he was ready to be “extubated” (breathing tube out), as he was starting to breathe over the top of the machine. This first time he only managed a couple of hours. The next couple of weeks were fairly horrendous as Alec’s lungs became very poorly. They kept collapsing, leaking air and at one point he had a pulmonary haemorrhage. The longer he was ventilated, the more damaged they would become, yet he couldn’t breathe well enough without the support. On a couple of occasions we were called up to his cotside in the middle of the night as he had pulled the tube out and the doctors and nurses had had to urgently replace it. As a result, they often had to sedate him, to stop him putting himself in danger by extubating himself before he was ready. Alec was sometimes given oscillation, a “wobbly” form of ventilation, thought to be gentler on the lungs. Eventually, it was felt to be the best plan to give him a course of steroids to assist his lungs and help him get off the ventilator – he managed 6 days on a CPAP machine, before becoming seriously ill with his tummy. Back on the ventilator for another 2 weeks, at one point on 100% oxygen and still desaturating. Slowly but surely he improved and was extubated again, much more successfully this time. Alec still required breathing support, and during the next few months, he went through BiPAP, CPAP, CPAP bubble, hi-flow, vapotherm, low-flow… before eventually shedding all tubes about a week past his due date. Although Alec is now well, he still has a diagnosis of Chronic Lung Disease, because he was still needing support for breathing at 36 weeks (gestation). We had expected him to come home with oxygen so the fact that he hasn’t is amazing! We have to be very careful of coughs and colds over the winter as they could make him very poorly.
We will never forget the moment when we walked into Alec’s room and found him surrounded by a sea of green scrubs, and our consultant for the week saying, “Things have taken a very serious turn.” Alec’s bowel had perforated. We were taken into the quiet room for an explanation of what was now going to happen. Alec had had suspected NEC (necrotising enterocolitis) a couple of times before and been on and off feeds, although never actually had it confirmed. However, this time the consultant suspected that it was NEC, the deadly bowel disease we had been dreading. It causes parts of the bowel to die and can then cause other organs to start shutting down. Alec was going to theatre urgently for life-saving surgery. The surgeons didn’t know what they were going to find or if they’d be able to sort it. Our tiny boy miraculously survived the 3-4 hour operation and returned to us with a stoma: a small part of his bowel on the outside of his tummy that the poo would come out of into a bag. They’d found no evidence of NEC. A week and a half later, a trickle of breast milk feeds began again, which he tolerated well. Over the coming months, my confidence went up and down with changing the stoma bags. Sometimes I cried daily over it: “Not had a cuddle for ages because of my cold – all I’m doing is the bags. Hate doing them but feel like I can do a better job than some of the nurses, so feel I have to.” (30/5/16) Other times I took control and took the lead on when they were to be changed, doing them myself with an extra pair of nurse hands! “The stoma bag lasted well and I changed it, successfully. Feel much more happy and confident about it now.” (3/6/16) When Alec began breastfeeding, the amount of feeds he was allowed from me was limited to 1-2 a day, because his input and output were being carefully measured, and sometimes he was needing replacement fluid. He wasn’t able to go up to full milk feeds until after the stoma was reversed because of his high poo output, staying on nutrition that went straight into his bloodstream. Alec’s stoma was reversed about 3 weeks after his due date, and, within a few weeks, his system was back to normal. He has a couple of big scars on his tummy but no other lasting effects.
Babies who are born prematurely are almost always exposed to high levels of oxygen, because they usually have issues with their lungs and breathing. This is obviously absolutely necessary to keep them alive. However, it can unfortunately cause the blood vessels at the back of the eyes to grow abnormally. If this happens, in the worst cases, the retinas can detach because the blood vessels kind of pull them away. In the overwhelming majority of cases, the opthalmologists are able to save the eyes by performing laser surgery on the retinas. They routinely test premature babies’ eyes to check for this eye disease, known as ROP (retinopathy of prematurity). The test is incredibly invasive and unpleasant. The first time Alec had his eyes tested, I stayed (I have a thing about leaving either of my boys when they need me – it shouldn’t matter if it upsets me or not). I was usually quite strong with such things but this one was horrific. The next time, I looked away, and all the subsequent times I waited outside the room until the ophthalmologist was done, on the condition that the nurse would look after him and comfort him in my place. Alec did have ROP, which the doctor thought would resolve itself. However after a few weeks of no improvement, they decided to carry out the laser surgery, on both eyes, about 10 days before his due date. This was successful! I have heard that Stevie Wonder is blind because of untreated ROP. Alec is almost certainly going to need glasses but that seems to be the extent of his eye issues for now.
Premature babies have a lot of blood taken to check for different things: infection, jaundice level, levels of different electrolytes, and most often, blood gases, which are a check of how successfully the heart and lungs are managing to get oxygenated blood around the body. Because they have so much blood taken from them (on Alec’s poorliest day he had something like 13 pokes), premature babies struggle to regenerate it in the same way a healthy adult would manage, so they often need transfusions. Alec ended up having 27 blood transfusions during his 5 month hospital stay, and 2 platelet transfusions. We could always tell the difference afterwards – he looked pinker and more healthy, and his oxygen requirement went down.
On arrival in Peterborough Hospital NICU, a large group of consultants were doing their “rounds” and Alec’s very very long medical history was related to the group so they all knew what they were dealing with. “Well, Alec has just picked up the extreme prematurity textbook and found out what he needed to do!” remarked one, referring to the fact that our tiny baby has suffered with almost every possible problem relating to his prematurity. Yes he has, but has endured and come out the other end with a strength, determination and tenacity that we cannot help but admire. He is, and always will be, one of the strongest people we know.