You may have seen on our Facebook page recently, a photo of Hope hooked up to a bunch of wires. We didn’t mention much about what it was for, so I thought now may be a good time to do so.

As you know, Hope had heart issues initially after she was born. As part of her checks, the cardiologist would do an ultrasound and look into Hope’s lungs and see what the pressure was like. The high pressure in her lungs was most likely a result of the heart valve issue however, the cardiologist wanted to be sure there was nothing else causing it, so she referred us to a respiratory doctor, Dr. Fitzgerald.

It was going to take some time to get in to see Dr. Fitzgerald. You don’t realise just how busy these doctors are until you have to book in to see one. It then makes you wonder how many kids are out there with health issues? How many kids do you see each day that have some sort of condition that requires them to see doctors multiple times a year? How much do we take our own health and the health of our kids for granted? I don’t think I thought about it all that much until we had Hope. Now, each time we visit Westmead Children’s Hospital, it makes me think about just how lucky we are. Even with many different doctor’s appointments each year, and multiple therapy sessions a week, we are so lucky to have what we have. But I digress, that’s not what I was here to write about today. Perhaps, I’ll share more thoughts about that another time.

Back to our appointment with Dr. Fitzgerald. As I said, it was going to take some time to get to see him, so while we waited for an appointment, they set us up to take home a small sleep study type machine for Hope to be connected to for a night. From memory, it was just a little machine with a probe that went around her foot and it measured her oxygen levels during the night to let us know if they were dropping. It was a little like the machine they would hook you up to at the hospital to keep track of your heart rate and oxygen saturation levels. A little side note here, when I went to pick up this machine, I had to pick it up from an area of the hospital that felt very behind the scenes. I walked into this little room with all these machines lined up on shelves and had no idea where to find anyone. I thought I had walked into a restricted area and in my little, quiet voice called out ‘hello’. Someone came around the corner and all was well, but a part of me was worried they were going to come out and yell at me for being there.

When we took the machine back, we then had to wait a while to get any sort of results. In the meantime, the lung pressures came down to a level that allowed Hope to have her surgery. When we did finally get to see the doctor, we were asked a few questions about her sleeping habits. The questions included things like, does she sleeps well, does she wake up happy or irritated, does she seem tired through the day, does she snore, and does she sleep all night? Hope had been sleeping through the night since she was about 4 months old, and didn’t seem to have any issues going to sleep. The only time she snored was when she had a slightly stuffy nose. She was still only about 6 or 7 months so really understanding her sleep habits were hard. My answers to the doctor’s questions and the results from the small sleep study meant the doctor felt fairly confident that there was likely no issues with Hope’s sleep or respiratory system however, we were booked in for a full sleep study at the hospital to check everything over completely.

The sleep study at the hospital was very different from the one at home. Hope didn’t just have a probe around her foot, she had multiple wires attached to her body, face and head. How anyone could possibly sleep with all of that attached was beyond me, but after some wriggling and whinging, she slept. The sleep study was able to collect a huge amount of data. They were looking at oxygen levels, how well she slept, how long she was in a deep sleep, how long she would be awake during the night and also if she stopped breathing, how often and for how long. I’m sure there was a lot more they were looking at too, with all those wires, but I don’t understand even half of it.

When we got the results back, the doctor was quite surprised to discover Hope had severe obstructive sleep apnea. Results showed that Hope would stop breathing more than 30 times an hour. yes, you read right, 30 times an hour. That’s once every couple of minutes. Hearing that news really shocked us and scared us. How were we not aware that her breathing was so bad while she slept. We had a breathing monitor on her cot, so we knew anytime she stopped, it must have only been brief, but it was still a lot. The problem with it meant that if she wasn’t sleeping well, she was probably more lethargic during the day, making it harder for her to do any sort of muscle-strengthening without feeling tired. If we didn’t address the sleep apnea, her development on all levels could be affected. The crazy thing is, Ben and I would have possibly had no idea had it not been for that initial concern from the cardiologist. It turns out it’s very common for kids with down syndrome to have sleep apnea and without the sleep study, you may never realise how bad it is.

I guess the whole process raises a question for me. When you have a child with Down syndrome, are you expected to just know these things, are you expected to know all the different doctors that you may need to see, or do these things usually come up in GP appointments or paediatric appointments? All the usual health things were checked in the hospital. We had the eye tests, the heart tests and the hearing. We had extra tests simply because Hope was 8 weeks premature and I’m not sure if that is normal for a full-term baby with Down syndrome. When we were discharged, we were given information and referrals for follow up hearing and eye tests. But no one ever mentioned sleep apnea. We had a similar thing happen with Hope’s hips. We went to a hip specialist because our paediatrician thought she may need a brace at about 9 months old. When we saw the specialist he told us it was common for Down syndrome kids to have issues with hips and knees and that we would need to see him yearly for a few years. Again, would we have known that, and would we have been referred to him at all in the following years if there was not that initial concern? I know there’s a lot of information out there, but if you don’t know to look for it, how do you find it? I guess it’s difficult because handing a checklist to new parents as they leave the hospital with their new baby and saying “here’s all the things you need to look out for and all the things you need to make appointments for over the first few years” would be just a little confronting, I guess I just hope that there’s no kids or parents out there struggling because they haven’t been given the information they needed to make the right medical choices and see the right medical professionals in those first important years of their lives. Once again, I feel like we have been extremely lucky in our situation with Hope where we have had supportive and helpful doctors right from the beginning.

Going back to the sleep apnea diagnosis, after Hope was diagnosed a stay in hospital was organised to learn how to use a CPAP machine, and to get all the settings right. Hope has used a CPAP machine ever since to help her oxygen levels and breathing while she sleeps. She wears it every time she goes down for a sleep, including her daytime naps. She’s taken well to the CPAP machine and actually looks like she’s waiting for it in the evening before she will settle herself to sleep.

After speaking with the respiratory doctor and also Hope’s ENT, it’s possible that she will not need the CPAP machine forever. There may come a time where her airways are clearer or perhaps she’ll have tonsils and adenoids removed which will improve her breathing. For now, we will continue to go into the hospital once a year for sleep studies (like the one we had recently) to see how she is going and checking the pressure of the CPAP machine, and we will continue to pray for the day that we no longer need the machine. But really, if that day doesn’t come, there are much worse things in the world than having to wear a CPA P machine while you sleep.