An unexpected complication

My boy had his two-day checkup while we were in the maternity hospital and all was well, except that they noticed he had a heart murmur. They were quite low-key about this, as this was apparently quite normal, newborns’ hearts sometimes not being fully developed at birth. The plan was for us to visit the hospital’s baby clinic at two weeks, after we had been discharged, to get things checked out. Having had a section, I expected to be in for at least three nights, maybe four, which was fine with me. If there was still a murmur at two weeks, we would have to go back to the baby clinic at six weeks; if the murmur was still apparent then, things would be investigated.

Breastfeeding sucks (when it’s not working)
In the meantime, we were having quite a difficult road with the breastfeeding. Much to my surprise in the busy postnatal ward, there was a lot of support available, between lactation consultants available on weekdays and the fabulous midwives themselves. He was able to latch around day two but didn’t seem to have the stamina to keep feeding, which I was assured was fine for the first few days before my milk had come in. Despite this, I had a complete meltdown on day two when things were not working for us and I felt a failure and anxious that he wasn’t getting enough food, as well as sad for him as he got more and more upset and frustrated. The midwives couldn’t have been kinder as I wept, drawing the curtains around me and reassuring me that things would get better. At times over the next days, I had two of them either side of me, sometimes for about 20 minutes, trying to get him to latch and keep feeding. They advised various things to keep him from nodding off: blowing on his face, stimulating his sucking reflex by stroking below his ears, taking off his babygro so he wasn’t too drowsy, turning on the light, making sure he was winded before feeding, and so on. My sister came in on the Sunday and helped as well. It’s amazing how you don’t care that your sister/a complete stranger is palpating your breasts and manipulating your nipples – all you want is your baby to feed. Things improved slightly but we continued to have major battles and I was dreading having to feed him. Whereas the girl in the next cubicle, who was bottle-feeding, would have her baby fed in about 10 minutes, and winded and asleep in another 10, I was pacing the corridors, the little man screaming with frustration, just willing him to feed properly, which often wouldn’t have happened even after an hour. My sister had warned me about the twilight zone of early breastfeeding but I wasn’t prepared for this.

Around day two I noticed his hands were trembling and waving around and raised this with the midwives, who said it was just his startle reflex. That night, however, his hands were moving uncontrollably, as if he was shadow boxing. I had to pin one arm down under the blanket and hold his other hand to stop them moving, which looked exhausting for the little fella. I took him into the bed with me and have never experienced such a complicated mix of emotions as he stared up at me with his huge eyes while his hands waved about. I was convinced he had some neurological problem and felt such a surge of protective love combined with fear for his future and sadness that a gorgeous child could have to endure this problem and all that went with it.

I raised the tremors with the team again on Sunday and they decided to check his blood sugar, which to my relief turned out to be 160, a measure that would be cause for admission it was so low. My instinct that we were having genuine problems with breastfeeding and that the tremors were not normal was right after all. We started him on formula and instantly the tremors disappeared. He was a different child after a full bottle, falling into a calm sleep instantly. They suggested I express milk as well and we started a regime of expressed breast milk and formula. It was reassuring to know how much milk he was taking in and to have him feed so easily at last, albeit from a bottle.

A surprise development
I could have been discharged on Monday but my blood pressure was still a little up and down, so we were delayed until Tuesday, when my bp, happily, was down and we were brought through all the discharge paperwork and formalities. I was packed and ready to go when the paediatrician said they were not happy with the baby’s weight. Apparently, he had lost around 500g since birth, about 13 per cent of his body weight, which again would be cause for admission in other circumstances. Coupled with the heart murmur, this raised concerns that meant they again weren’t comfortable with us going home. I agreed and again was glad they were taking our feeding problems seriously, and we settled in again. They took the baby off for a heart scan the same day and I wasn’t prepared at all for what came back. It appeared from the scan that he had a narrowing of the aortic valve, which the doctor explained was because the valve had two ‘leaflets’ or gates, instead of three. She described the typical valve as looking like the Mercedes logo, with three lines, but two of his had fused, making the valve narrower than it should be. In other words, he had aortic (valve) stenosis. This meant that the pressure in the part of the heart that pumps the blood to the rest of the body was higher than it should be, not good news for his left ventricle apparently.

I was pretty floored by this and even more floored when they said we were to be taxied across town that afternoon to the children’s hospital to get this diagnosis confirmed. My mother was on her way in to visit and got there just in time to come with us. It was my first time outside the hospital since being admitted the previous Wednesday and it felt surreal taking off my nightclothes and venturing out into the world in civilian clothing again. A midwife from another department accompanied us and, this being the small world that it is, it turned out that she was from my parents’ road and recognised my mother.

Newborn ECG and echo

Being checked out at the children’s hospital

The little fella was oblivious to all the drama and was as good as gold during his echocardiogram and ECG at the children’s hospital. We were there for a good couple of hours and the consultant confirmed the diagnosis of aortic valve stenosis. After a c-section and six nights of little sleep in busy wards, my brain was not firing on all cylinders but my understanding was that my little boy had a bicuspid valve (with two instead of three leaflets) and the gradient (pressure) around this area was 45-50 as a result of this narrowing, instead of 10. He was given a 24-hour heart monitor to wear until the next evening and we were taxied back to the maternity hospital with an appointment booked for the following Tuesday to discuss the plan of action based on all the available information. Most likely, they would carry out a procedure in the next two weeks that would involve inserting a balloon through his thigh to stretch or tear the fused leaflets and make them into two (aortic balloon valvuloplasty).

Strangely enough, I was calm about the whole thing. In all the time at the maternity hospital, I cried only twice, and both times were about the breastfeeding not working. Having been convinced that he had cerebral palsy or similar a few days before, I was happy to take some tinkering with his heart. There is something about heart conditions that seems more like plumbing than other conditions and I knew he was in great hands at the children’s hospital. And, once again, the public health care system amazed me – despite all the resource constraints and problems, we received amazing service once it was apparent that there was a problem, and the staff in both hospitals could not have been nicer or more on top of things.

I got a phone call from the children’s hospital on Thursday with a change of plan. Instead of a consultation on Tuesday to decide next steps, they wanted to carry out the procedure that day. I would receive a phone call on Monday with details about where and when. Reading between the lines, I guessed the results of the 24-hour analysis and all the other info implied that the problem needed to be sorted sooner rather than later, and I was okay with that, if slightly flummoxed that things were moving so quickly. Had we been discharged earlier, we would have waited until he was two weeks old to start investigating the murmur, which would obviously not have been a good thing.

High blood pressure (not surprisingly)
My blood pressure was all over the place by this stage despite them giving me various combinations of meds, and the focus shifted away from the baby and back to me. There followed a couple of days when they monitored it for 24 hours at a time and said they would only discharge me on the condition that it was below 150 over something for that entire period. I explained that this was a self-fulfilling prophecy for someone with white-coat syndrome and that the lack of sleep on the busy postnatal ward, with five other mothers/babies, new people being admitted at all hours of the morning, dinner ladies clattering in with meals at all hours, visitors whooping it up all day, and midwives waking me for bp meds at 5am, 6am, noon, 1pm, 6pm, 10pm and midnight wasn’t really conducive to low blood pressure. Not to mention the fact that the minute I heard the wheels of the blood pressure trolley squeaking towards my cubicle, I got stressed.

My brother joked that I would never get out and that we would have to raise the boy in the maternity hospital, and he offered to check out creches in the area. Finally, when I was convinced I would forever be in a Kafkaesque cycle of failing the blood pressure tests, they decided to let me go on the Sunday on the condition that I visited my GP on Monday and Wednesday to have my bp checked. Having watched probably a dozen women come and go on the ward, I would have agreed to anything at this stage. We finally made it home at noon on Sunday, after 11 nights in all in the maternity hospital. I have never been so happy to get home and to experience the simple pleasure of using my own bathroom and sleeping in my own quiet bedroom. This time, with my little boy beside me, knowing the only baby’s cries I would hear that night would be his.

Aortic balloon valvuloplasty
We had Sunday and Monday night at home, and on Tuesday morning my sister drove us to the children’s hospital for 7am. We were first to have the procedure done that day and said goodbye to the little man in the theatre. It was heartbreaking seeing him in his tiny gown with a mask being lowered onto his little face in that gigantic theatre surrounded by a team of about eight people.

baby in hospital gown recovering from heart procedure

Recovering in his little gown after the procedure

Around 10am we got a call to say they were finished and we went down to talk to the surgeon. He said the procedure had gone even better than expected and he was very happy with the result. Various things could have gone wrong, including back-leakage or even the need to replace the valve that day. I deliberately hadn’t been googling the condition and was handling things on a need-to-know basis and so was taken aback, as was my sister, when he said that the valve would still need to be replaced some day in open-heart surgery. He knew people in their 20s who still hadn’t had it replaced; obviously, if it had to be done when he was very young, we would need to have a repeat operation as he got bigger. We shelved this new information, happy that things had gone well that day at least.

Newborn in incubator

In the incubator keeping warm that night

It took him a long time to recover from the anaesthetic and they put him on a glucose drip. It was a little scary seeing how lethargic and upset he was, as he had been alert and lively since day one. An echo/ECG that evening showed that his heart was in great shape, however, and that the pressure around the valve was down to 12. We were told we would have to stay the night, which suited me, as I would have been terrified taking him home. To my surprise, we had a room of our own with a bed for me in the newly built heart wing, and we settled in for the night after my sister had gone home. His hands were a little cold, and they kept him in an incubator until the wee hours, when he started to look like his old self again and was ready to bottle-feed. After a not very restful night, we were discharged at around noon the following day with an appointment to see the consultant in six weeks and the surgeon in six months.

I got a bill in the post during the week for the grand sum of €75 for our time in the children’s hospital and would have paid 10 or 20 times that. I feel very grateful to live in a country with a public health system that, despite its problems, looks after you well in cases of emergency. Between the maternity hospital, where they spotted the problem so early, and the children’s hospital, where the team was incredible, we have been so lucky with the care we have received – even if the little man remains unaware of all the drama that’s been happening over the last two weeks.

A couple of weeks later, we’ve settled into a routine and I am loving it. I feel very lucky to have my brave little boy at home with me.

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11 Responses to An unexpected complication

  1. Wow how frightening. I’m so glad you both are doing much better.

  2. Thelma says:

    Oh my goodness. I was on a roller coaster reading this post. Glad all ok now. Poor little angel. What a start to motherhood.

  3. Glad everything is ok – poor little thing! Hopefully you can now get into a routine at home. That’s a hell of a long time to spend in hospital!

  4. Oh my god how brave you are, as well as your little boy, what a scary time. So wonderful to hear that you and he and home and okay. And the public system where you are (the nhs?) does sound like it was fantastic.

    • All settled now thankfully. I’m in Ireland and the health care system is falling apart at the seams in places but we had a brilliant experience. I hope you can relax soon when all your tests are done – I know that feeling of not quite believing it’s real.

  5. Ann says:

    Just wanted to say congratulations on your beautiful boy. What a journey you’ve had!

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