DDH diagnosis – bracing for the journey ahead…

Our two year old was diagnosed with DDH – developmental dysplasia of the hip at birth.

She spent the first six months in a harness before moving into a brace which kept her hips secure in their socket.

She eventually moved from full time brace to night time only and it came off after eighteen months.

Next step was a cast – put on under anaesthesia. Her legs would be splayed like a frog and the cast would be changed every six weeks. Changing nappies would be challenging but with practice we’d be pro’s in no time. She’d stay in the cast for up to four months. Success rates for the treatment are very high.

We were devastated when we first found out she had DDH. We had never heard of it before and it came as a shock. She was so perfect. How could this be possible?

The paediatrician was very forthright and matter of fact. I’m sure he was well used to imparting such diagnosis but we weren’t well used to receiving such news so it took a couple of days to internalize it.

All kinds of questions swirled round in our brains – what did this mean long term? Was it debilitating?

It was one of those times when I was so grateful that himself felt exactly the same. Mostly he knows exactly what to say and it sometimes irks me that he appears to have the answers when I don’t, but this time it felt like we were going through something together so we could be open and vulnerable with each other.

We resolved to do everything in our power to help her overcome the situation. We gave ourselves a day to be down in the dumps then we picked ourselves back up and tried to look forward.

Every time we got bad news we’d allow ourselves the time to be sad and emotional then we’d get back in the saddle again. That was important for us as bottling up only makes things worse and can create tension and we needed to work as a team.

Her first bath in the hospital was also to be her last for a while as we couldn’t take the harness off

so himself bathed her, terrified of letting her drop and I recorded it. We cuddled her as much as we could before she went into the harness.

I loved the feeling of her nestled in my arms. One of the hardest things afterwards was not being able to cuddle her properly in the harness. Its bulky weight spanned her torso creating a barrier.

Every Friday we would take her to physio where her harness was adjusted as she grew and every couple of weeks they would replace the harness as it would get grubby and we got to sneak a quick hug each. It was the most amazing feeling in the world.

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Our darling in her harness at 4 days old. Dressing, bathing and changing nappies were a little more difficult but manageable.

 

We researched all we could on DDH and adapted her crib to accommodate her new shape. We had to ensure she was in the frog position at all times so carrying her or cuddling her meant having her splayed against your chest. Loose dresses were the most practical and lucky for us they were all the fashion so were in plentiful supply.

After the harness she went into a brace which was more rigid and didn’t allow her to move her legs at all. She came out of it for a couple of weeks but had to go back in as the hip bone was starting to slip out of the socket.

She had just started to take her first steps so it felt like a step back for us

but as it turned out she overcame that particular obstacle and a couple of weeks later, at ten months started to walk in the brace albeit like a little cowboy.

A couple of months later her consultant decided to take her in for an operation to put her in a cast as its more rigid than the brace and is the final step in the process. Its done under anaesthesia so its a step that is avoided unless absolutely necessary.

We did lots of research and looked at YouTube videos of parents giving practical advice on managing with a cast, primarily changing nappies, keeping the cast clean and how to prevent chaffing.

I bought lots of oversize loose dresses and tights that would fit over the cast as it went from upper chest down to her ankle on her right leg and to her thigh on the left leg.

Himself searched online for the widest car seat he could find and got the very last one which was available in Argos and he put it into the car ready to go.

In the pre-op waiting room we bumped into a lovely couple that were having the same procedure as us. We had seen them many times at physio. The mom was distraught and still hadn’t come to terms with the situation. My heart ached for her.

I could recall the day they had gotten bad news at their first orthopaedic visit. She had come out from the consultant visit openly weeping and clinging to her baby while her husband tried to console her.

They were younger that us and from Poland. She spoke less english than him so she was struggling fully understand the road ahead of them. They were without any family support in Ireland.

We were so luck by comparison with both sides of our family only a drive away and ready to step in at the drop of a hat. This couple were balancing their working hours so that one of them was with the baby at all times. How they were going to manage in the months ahead I’ll never know.

We answered lots of questions imparting some of the knowledge we knew. It was a comfort to know that there were other families going through the same thing as us and shared the same fears and hopes for success.

Letting our baby go into theatre was heart-wrenching. Thank goodness she was so young and has no recollection of it. The wait was interminable.

Finally we got a call to say she was coming around and was in the post-op ward. We recognised her little cry and went rushing in to be there when she fully came round.

She was a tiny bundle in her hospital gown in the big bed.

Himself got into the bed and she clung to his chest, her gut-wrenching sobs broke our hearts. As it turns out her consultant was able to give us some good news.

Her hip bone was securely positioned in the socket and the brace seemed to be doing a good job eliminating need for the cast. We almost cried with relief. Instead we thanked him and hugged our baby tight. Finally – we caught a break.

Across the ward were the Polish couple. Their baby had had the operation and was now in a cast. The mom was inconsolable. None of the clothes they had fit the baby anymore and the car-seat was very tight.

We gave them the oversize clothes we had brought. They were both so grateful. We took their number and the next day met them to give them our car seat.

It was the least we could do after all we still weren’t out of the woods and may be grateful for a kind gesture from another parent someday.

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