Carrying Children With Special Needs

Daniela Schulze

My Experience With the Didymos Wrap as the Mother of a Child With a Disability

A letter to Didymos, 17 July 2001

Annika's Diagnosis and Birth

Up to the 24th week, my pregnancy was completely unremarkable, but then my husband and I learned that our daughter Annika has Down syndrome and, as a result, a congenital heart defect (complete AV canal). At first, this news was a huge shock for us, but before long we were able to accept our situation. Annika was, and is, a much-wanted child; her disability hasn't changed that.

Personally, I don't see trisomy 21 (meaning chromosome 21 is present three times instead of the usual two) as a disability at all, just as a difference. Annika was born on 9 September 2000 at the University Hospital in Cologne. Sadly, she could only lie on my stomach for really just one minute right after birth; after that she was immediately taken to the adjoining examination room by the waiting doctors and given medical care. While I was still lying in the delivery room, I heard my child crying in the next room – this was a very difficult moment for me, and I was glad that at least my husband was able to be with our daughter at that time.

The First Weeks in Hospital

After initial care, Annika was moved to the intensive care unit, and I didn't see her again until the next day. But what did I see? Barely a human child, more like a tangle of cables and IV lines. Our daughter is a tough little fighter, though; after just one day she could be moved to the cardiology ward.

Without the medical care in hospital, Annika wouldn't have stood a chance of survival, but the atmosphere there is hard to bear. Because of the electrodes and cables connecting her to the monitors, and the IV lines, I could only hold Annika in my arms to a limited extent; carrying her around wasn't possible at all. After four very long, nerve-wracking weeks, we could finally go home.

The Wrap Comes Into Play

That's when I remembered the Didymos wrap again. Being able to order a loan wrap made my decision to buy easier, because at first I wasn't sure whether the wrap would even work for our special child. With the loan wrap, I could try it out calmly and knew I could send it back if we ran into problems. A big compliment to Didymos here for this good idea. I was also pleasantly surprised by the fast delivery – I had the wrap in my hands just two days after ordering it by phone.

After what were probably the usual beginner's difficulties with tying (the suggestion to practise first with a doll worked well for us too), I soon got the hang of putting it on. But instead of cheerfully heading out for a walk with my carried child, I felt unsure of myself. Because of her Down syndrome, Annika has increased connective tissue laxity and reduced baseline muscle tone. On top of that there was her congenital heart defect, which hadn't yet been operated on at that point.

So I watched Annika very critically: how is she sitting in the wrap? Isn't her upper body being compressed too much? Is she getting enough air? Can her heart cope with this posture? I would have loved to be in touch with other "wrap mothers" to know how healthy babies behave in a wrap. Since I had no way to compare, I called Didymos for advice several times.

How Carrying Helped Us Both

The more often I carried Annika in the wrap, the smaller my fears and worries became, as I noticed how comfortable Annika felt in it. At first she watched her surroundings with interest from her "high seat"; later she rested her head against my chest, and it wasn't long before she fell asleep. In her first months of life, our daughter had frequent crying fits, usually around midnight.

Sadly, I could never quite work out the reason for this, but one thing that always helped in these stressful moments for both child and mother was the wrap. As soon as Annika was snuggled close to my body in the wrap, she'd grow calmer within a few minutes – and so would I! After some hesitation, I also dared to pull the fabric a little further over her head, dimming her immediate surroundings, which calmed her further still. Even today, we still go through phases where Annika will only fall asleep in the evening in the wrap; my footprints are already starting to show in the hallway carpet from all the pacing back and forth...

Practical Experience: Carrying Positions and Temperature

The age guidelines Didymos suggests for the different carrying positions don't apply in our case – Annika is still too small for the back carry, and despite now being 10 months old, she's too unstable for the hip carry because of her low muscle tone. The wrap cross carry works best for us.

Before her corrective heart surgery, Annika almost always had cold legs and feet in the wrap – even in warm weather. I always dressed her lower body in several layers plus fur-lined booties, but it didn't make much difference. Since Annika neither cried nor showed any other signs of discomfort, though, I learned not to worry too much about her cold limbs. I did avoid being out with her in the wrap for more than an hour at a stretch. Since her heart surgery, this problem no longer exists. For her upper body, Annika reacts the exact opposite way: even in fairly light clothing, she often gets heat rash, even in winter.

What Carrying Means to Us

I already carry our daughter in my arms a great deal anyway, but the even closer physical contact the wrap provides creates an intimacy that Annika, and I too, thoroughly enjoy. Here, we both experience a feeling of security that makes it easier for us to process the many hospital stays.

In my view, the extreme situation of a hospital stay lasting several weeks leaves "creases" on a child's soul (and on the rest of the family's). The child is torn out of its familiar surroundings; it has to endure numerous, often painful examinations; physical contact with the mother is made harder by the necessary cables and IV lines; the mother is tense, which in turn transfers to the child. Parents of seriously ill and/or disabled children will certainly know what I mean. It's especially to them that I'd like to give the courage to try the wrap – it helps with processing such experiences afterwards.

Advice for Other Parents

Of course, using the wrap should be discussed with the treating doctor and, if applicable, a physiotherapist, but don't be discouraged if medical staff unfamiliar with baby wraps advise against it across the board. In the end, it's always the parents' responsibility, and it makes sense to weigh up the pros and cons, watch your child closely, and above all trust your own instincts!

I asked our physiotherapist whether, in her opinion, all children with Down syndrome could be carried in a wrap. She said yes, but stressed that carrying frequency and duration should be adjusted depending on the severity of the connective tissue weakness. She also recommended that we reduce how often we carried Annika, since her low muscle tone had worsened over recent months.

Not all children with a congenital heart defect and Down syndrome will tolerate being carried in a wrap as well as our daughter Annika does, of course; but most will probably enjoy it. In my personal assessment, a baby wrap is very well suited to healthy children – but even more so to children with disabilities! I can, of course, only speak from the positive experience we've had with our daughter, but I'd like to encourage all parents of a disabled and/or ill child to give the wrap a try.

If you have any further questions for me, please feel free to get in touch with me through Didymos.