Being the parent of any child is, without a doubt - and without exception - an incredibly challenging, time intensive and rewarding experience. Children bring such joy to our lives, as parents, but they also require more attention than we're often able to give whilst maintaining the degree of sanity required to remain calm, patient and reasonable people. In this post I want to explore the differences between being the parent of a trisomy child, and being the parent of a child without any significant health or development issues. This post will focus on my personal experience with my 2 and a half year-old full trisomy son, and my 5 month old healthy daughter.
Just a note that my son, who has full trisomy 13, has a tracheostomy tube for breathing, a PEG tube in his stomach for feeding, and is bed-bound or wheelchair bound 24/7. He cannot walk or talk. He is severely mentally and physically disabled, as most (if not all) trisomy children are (exceptions are those with mosaicism, who have widely varied capabilities).
A photo of my son (right) and daughter (left).
We'll start off by comparing something that has been made much more challenging by a recent development with my son's health.
1. Diaper Changing
Changing my daughter's diaper is so incredibly simple: diaper comes off, quick wipe with some wet-wipes - making sure to wipe down, not up - and then whipping on a fresh diaper. The whole process is over in about 15-20 seconds, and happens, on average, about twice a day.
Changing my son's diaper, on the other hand, can be anything from a quick wipe & change for #1's, to a long and delicate process involving gloves, disposable mats, disinfectants, and even a full wash cycle. It can be massively time consuming and require a high degree of care to carry out, which is an issue when he usually goes around 3-4 times per day!
This was not always the case. There was once a time that my son & daughter's diaper-changing processes were not all that dissimilar. However, my son was recently diagnosed with CRE bacteria (carbapenem-resistant Enterobacteriaceae bacteria). This is a type of bacteria, present in his bowels, which is resistant to one of the most important (last resort) antibiotics used in medicine today. As a result, we must handle his dirty diapers with extreme care to help avoid spread of the bacteria to anyone else in the household.
Here are the steps when changing his dirty (#2) diaper:
- Put on a pair of disposable rubber gloves
- Lay down an absorbent disposable mat (usually a dog sheet) if one isn't already there
- Get a disposable plastic bag and open it up for ease-of-access, get a fresh diaper, and at least 3-4 wet wipes out of the container
- Clear the area around his bottom (remove toys, sheets, towels etc)
- Undo his nappy, and carefully lift up his legs
- Wipe around his bottom and legs to remove all of the visible "stuff"
- Ensure that his hands do not come into contact with the "stuff" (difficult when he constantly grabs his legs and upper thigh when changing him)
- Hold his legs up & wrap the diaper and wipes in the disposable mat - place carefully into plastic bag.
- Remove gloves whilst still holding his legs up. Place into plastic bag.
- Put new diaper on him.
- Dispose of plastic bag containing diaper, disposable mat, gloves and wipes.
- Extra steps for situation when his "stuff" got on any toys or sheets:
- With gloves - take contaminated sheets/towels/toys, and soak in bleach solution and hot water (preferably 90degrees or higher) for 10 minutes+
- Put contaminated items through a full wash cycle (do not mix with uncontaminated laundry)
- Hang, dry, etc.
Steps for changing my daughter:
- Change diaper.
- The end!
Changing my son's diaper is something that I must do as his parent, and something that I happily do for him because I love him. It would just be nice if it wasn't a biological waste hazard every time I did it.
Next on the list is something that differs even more widely between my children. In fact, they bear absolutely no resemblance to each other whatsoever.
2. Feeding
Feeding my daughter is solely the responsibility of my wife, as we are breast feeding exclusively at the moment. In the future, once she grows up a little, we'll move to feeding solids etc, but as I'm writing this post, I don't really have any involvement in this area, save for perhaps providing moral support...
For my wife, feeding is a very time consuming and energy intensive process; it happens quite a number of times each day (I want to say around 6 times?) and is a constant source of interrupted sleep and stress for her. However, it is also a wonderful opportunity for mother and child to spend quality time together, bonding, cuddling, and playing. It is one part of being a mother that my wife always looked forward to, and it brings both of us so much joy that she's able to see that dream fulfilled.
Feeding my son, on the other hand, is a much more sterile, medical process. He has a PEG tube in his stomach, which is essentially a little artificial valve poking through his tummy. We feed him by filling a bottle full of a meal-replacement liquid (as well as, from time to time, homemade blended smoothie-type mixtures) and attaching this via a tube to the valve. This liquid then feeds automatically into his stomach over a period of about 45 minutes. Then, it's just a matter of disconnecting the tubes, washing & rinsing the bottle and tubes, and putting them all away until the next feeding time (every 4-5 hours).
I think the experience of tasting, chewing and enjoying food is an incredibly important part of life, and I feel a great deal of sorrow that my son is not able to have this experience. I do take solace in the fact that he may never understand what he is missing out on, like many of the limitations that he has in life, and that he is very content regardless of these missing pieces, but I do wish that at some point in the future he may get the opportunity to have a more intimate relationship with something most of us take great pleasure in.
Next up is one of the most joy-filled parts of my life as a parent. This is something that I do constantly throughout each and every day with both of my children that never ceases to bring me immense pleasure.
3. Playing
Playing with my daughter is so close to the stereotypical way of playing with a baby that it barely warrants a description. It is a combination of bright happy facial expressions and voices, tickles, bouncing her around, singing and dancing, and games like peekaboo and patty cake. Getting a laugh out of her remains as one of my primary goals in every single day of my life.
Playing with my son is similar in some ways - he also loves to be tickled, bounced, and to hear the voices of his parents - but I would say that my style of play with my son resembles that of an owner playing with their puppy dog, rather than that of a parent and young child.
Excerpt from 'The happy, but simple life of a Trisomy 13 child':
I play with him all the time. I dance with him. I throw him around. I curl up in a ball with him. I lie on top of him. I stretch him out and roll him up. I pull him this way and that. My fingers explore his entire body in sudden bouts of tickles, and then help him drift off to sleep with soothing strokes, pats, and the warmth of my palms on his bony little chest. He smiles as he closes his eyes to sleep; his hands clasping his dummy to his mouth, my huge warm hand resting on his forehead.
He loves to be tickled, kissed, rubbed, picked up, cuddled and bounced around. He loves rough-and-tumble play. He loves to have his forehead rubbed furiously by daddy's rough hands, and his rib cage nearly stripped bare by the always-lurking tickle-machine fingers. He delights in being hoisted high into the air alongside his dad's sharp stubbly cheeks, and kissed all over his beaming face.
He loves to be tickled, kissed, rubbed, picked up, cuddled and bounced around. He loves rough-and-tumble play. He loves to have his forehead rubbed furiously by daddy's rough hands, and his rib cage nearly stripped bare by the always-lurking tickle-machine fingers. He delights in being hoisted high into the air alongside his dad's sharp stubbly cheeks, and kissed all over his beaming face.
Play-time with both of my children constitutes some of the happiest, most joyous moments of my life. They are quite distinct from one another, but they are both absolutely full of love, affection, and as many giggles and smiles as possible.
Last up, I'll talk about all of the additional things that my son requires in his care to which my daughter has absolutely no equivalent.
4. Trisomy extras
As mentioned at the beginning of this post, my son "has a tracheostomy tube for breathing, a PEG tube in his stomach for feeding". He also uses a heart & oxygen saturation monitor, which is attached to him almost all of the time. Here's a list of tasks required to care for him:
- Tracheostomy tube needs cleaning on a daily basis (and band needs changing)
- Tracheostomy tube needs to be suctioned (cleared of mucous) at least 20-50 times a day
- Tracheostomy tube needs to be changed once a month - usually requires hospital visit (incl. health checkup)
- Tracheostomy filter needs to be changed daily or as necessary
- PEG tube needs to be maintained - often requires changing absorbent pad multiple times a day
- PEG tube needs to have the water balloon (to hold it in place) refilled once a week
- Heart monitor needs to be removed & re-attached whenever he bathes, and needs to be replaced once a month or as required
- Need to keep bagging device (manual resuscitator) near him at all times for emergencies
Those are the main tasks that must be completed on a regular basis. Otherwise, our son is much more fragile than our daughter. He is very skinny, and his neck muscles are weak, meaning he needs to be handled very carefully. When leaving the house, he needs a pram or stroller, as well as a suction machine to clear his trach when needed. He also needs some toys to keep him occupied, as he gets easily bored without something to play with.
Going back in time to when my son was under 1 year old, the above list would be much more extensive. He used to have a ventilator that caused a huge amount of work and inconvenience for everyone, as well as a machine to increase the humidity in his breath for short periods that was used on occasion, and an oxygen tank that we had to keep near him at all times.
To be honest, despite this post seeming to be an indictment on how challenging it is to raise a trisomy child, it is actually my healthy daughter whose care requires a relatively large time investment. Yes, there a whole lot of labour intensive tasks required to care for our trisomy son, but the amount of attention that our daughter demands is, honestly, astronomical.
Oh what an absolute joy they both are though.
Thank you for reading. Please leave any questions you might have in the comments!
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