Skull surgery and sleep training

Occasionally I come across a very complex medical case I’m asked to help sleep train. My job as a baby whisperer is most definitely not for the faint-hearted. After 29 years as a registered midwife and nurse, I’ve seen a lot of rare and complicated cases as well as the run of the mill to sleep train. I’m really grateful for my medical training as it helps me understand babies at a more complex and deeper level. For example, I’ve worked for many years in neonatal Intensive and special care looking after extremely premature, ventilated sick babies.

Medical cases I’ve helped

Tetralogy  of Fallot

Some examples of complex medical cases I’ve helped include a 6-month baby, Tilly with a congenital heart defect – tetralogy of fallot. This comprises a VSD (Ventricular Septal Defect – hole in the heart) with Pulmonary Stenosis, with the Aorta “Overriding” (sitting ‘astride’) the VSD and with Right Ventricle ‘Hypertrophy’ (thickening of the muscle). These babies appear ‘blue’ or cyanosed and often require surgery in stages. Tilly had surgery not long after birth and then recently at 2-3 years old.

Reflux with Obstructive Sleep Apnoea and CPAP

I’ve also helped a few babies with very complex reflux requiring ventilation via Continuous Positive Airways Pressure to help their obstructed sleep apnoea.

https://www.parentingscience.com/baby-sleep-problems.html

complex medical cases

Being a mum instead of a paediatrician

What also sets this story apart is the mum is a consultant paediatrician. As I tell many parents, when emotion comes into parenting it affects your judgement to make decisions and to be able to sleep train. Many of you know I have helped many doctors, GP’s, and about 100 psychologists, including child psychologists with their babies and children’s sleep. At the end of the day, these are parents first and foremost. Parenting is the biggest leveller of life.

Craniosynostosis is a rare medical condition, where the skull bones fuse prematurely and usually requires surgery. In my career I’ve come across 6 cases of this condition, 4 I identified myself. If you’d like to read more about it here is a link.

https://www.mayoclinic.org/diseases-conditions/craniosynostosis/symptoms-causes/syc-20354513

https://www.chop.edu/treatments/surgical-treatment-craniosynostosis

Mums story

Karen came to help us with our 6-month-old, little girl. She’d had major skull surgery at a very young age (traumatic for everyone) and had spent a significant amount of time in the hospital. She was waking at least hourly all night and the only way to settle her was to feed her. After what she’d been through we didn’t want her to suffer anymore and couldn’t see any other solution, but everyone was exhausted and we had a hyperactive 2-year-old at home as well.

Karen had helped us with our first, so tentatively we asked if there was anything she could do to aid the situation. Karen was very empathetic but was able to interpret Cara’s cry and reassure us that she wasn’t in pain. We never left her to cry, we sat with her whilst she settled, sung to her, did some hands-on soothing and amazingly the length of time she spent crying was actually far less than one of our ‘normal’ nights!

The first night she only woke twice (previously hourly!!) and within a week she was going to bed happy and sleeping through the night 7-7. She was much happier and so were we!

baby in helmet

She had to start wearing a helmet shortly after, for 23 hours a day. I was dreading it and thought it would return her sleeping habits to old ways. Amazingly it didn’t affect her at all, she slept just as well in the helmet.

Had we not got Karen in prior to introducing this I think her sleep would have just become worse as we’d have interpreted every cry as discomfort. Having a baby with medical problems has a huge emotional impact on the family; sleep deprivation added to this only makes it harder. Seeing how much happier Cara was after learning to sleep made us wish we’d addressed it sooner. We also had the energy again for our toddler.

We are very grateful to Karen for restoring some normality to our family, thank you!

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