Gideon’s Story

This piece is the third installment of our series looking at how babywearing and carrying is more than just being about the sling and how it can help families who have babies and children with additional needs. It is written by Rae, a Mum of Three. I have ‘known’ Rae for the majority of my own carrying journey as we are both members of the Natural Mamas forum and we shared our own pregnancy journey’s on its pregnancy sub forum. Here Rae will explain how using a sling helped her care for and bond with her third son. When Gideon was born he was diagnosed with Prader-Willi Syndrome or (PWS). 

At birth babies with PWS are usually very floppy (hypotonia) and this means they often cannot suck properly, have a weak cry and often do not have a full range of movement. It is a genetic disorder that is typically not diagnosed until baby has been born, although lack of movement in utero can be associated with the condition. There have been research studies undertaken to investigate if fetal ultrasound scanning can be used to help diagnose the condition but currently 99% of cases are diagnosed via genetic testing.

gideon scbu

“Gideon is my third child – I’d carried my previous two children in slings and planned to do the same with Gideon. What I hadn’t planned on, was Gideon being born with Prader Willi Syndrome; a complex genetic condition which causes learning difficulties and challenging behaviours. Gideon spent the first week of his life in intensive care – the first two days on a cooling mat, so I couldn’t even touch him. He then spent a further two weeks in SCBU.

When he came home he was fed via a nasal gastric tube and was on continuous oxygen – he had to be connected to oxygen tubing at all times, both in and out of the house. In addition, a part of Prader Willi Syndrome is hypotonia – lack of muscle strength. Gideon was extremely floppy, even for a newborn baby. He didn’t move, or even cry; we needed to change his position regularly as he couldn’t move himself.

The feeding tube, oxygen tube and hypotonia all presented challenges when planning to wear him. The feeding tube was easiest to deal with – it was simply a case of being aware of it and be vigilant in ensuring it wasn’t accidently pulled out. The oxygen tubing proved trickier. When carrying in the house, it was a case of being very careful not to trip oveoxygen tankr the training tubing – of course this was always the case, whether he was in arms or in a sling. When out, Gideon had to be attached to an oxygen canister which provided and interesting logistical challenge. The O2 was heavy and awkward. I was provided with a bag to carry it in but this was unwieldy. A very lovely friend who is an upholstery seamstress created a made-to-measure oxygen carrier which I could wear across my body. This mean I could carry baby and oxygen far more easily – thankfully, being used to toddler carrying, I didn’t find it too heavy!

gideon pouch

The most challenging aspect of carrying Gideon was his hypotonia, which affected his whole body including his neck and the muscles that controlled his lungs and breathing. Protecting his airway was vital. We all know how important positioning is in slings and car seats; for Gideon, this was critical. We discovered that the optimum position for Gideon was with his neck extended and his head tipped far further back than a typical baby.

gideon rrThese adjustments meant I was able to carry Gideon in various slings as soon as he came home. This had many benefits for us both: I wasn’t able to feed Gideon at the breast and had to express milk and feed first via a tube, then a bottle. Wearing him in a sling kept him close and safe. Being so quiet and unable to cry, I didn’t feel safe leaving him alone, ever, so the sling kept him close. Having two older brothers, I was doing school runs and out and about lots; slings made things so much more practical.

gideon daddy

Gideon is three now and making slow, but steady progress. I’m still carrying him now, although far less as he is walking. Babywearing Gideon certainly presented challenges, but the benefits far, far outweighed any of them. Gideon will now bring his sling over to me and ask to go up. He loves his special cuddles.”

family

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s