Hull mum’s fight for diagnosis after young son became unable to walk

A mum from Hull has spoken of her emotional battle for a diagnosis for her young son who can no longer walk.

Amina Sadik, 26, noticed her son Saif’s left foot turning inwards, moments after he was born on May 28, 2020.

Despite repeatedly mentioning this to health specialists, Amina and Saif still don’t have a proper diagnosis – almost two years later.

Click here for the latest real life stories

Here is Amina’s story:

It wasn’t until a few minutes after giving birth to Saif that I realized his feet just didn’t look right. They leaned inward. I had told the midwives at Hull Women’s and Children’s Hospital about it and they reassured me that it was “normal”, but 0 as any mum knows – your gut never lies and that feeling never lies. never seemed to go away.

I gave birth to Saif during the peak of the lockdown in 2020. I was only allowed one person in the delivery room and that was my husband. Although it was a scary time, I had complete faith in the NHS to make my experience as smooth as possible.

At every check-up appointment Saif had when he was a baby, my husband or I made sure to mention his foot and we were told it was completely normal and was due to the position he was in. he occupied when I was pregnant. They told me it would go away within the first few months.

Over time his foot never changed and I began to notice a huge delay in his general development that had not been detected by any healthcare worker.

Although we were lucky to get face-to-face appointments, we felt that we did not receive all the care for Saif as we should have. We never failed to mention the problem with his foot, but it was never taken seriously.

It wasn’t until Saif was six months old that it was very clear to us as parents that his leg was a problem as he couldn’t crawl or stand and we felt like his foot was bothering him. . Again, we were told he might be a late developer and we shouldn’t care.

Being told not to care didn’t really help, it got frustrating.

Over time Covid made it difficult to get an appointment – but we were adamant about getting answers.

We were lucky enough to get an appointment with our GP just before Saif’s first birthday where we finally felt someone had listened to us and we were referred to a paediatrician.

As we waited for our date, Saif started fooling around and tucked his left foot inwards, it was like he had no control over it.

Then he started to stand with his left foot bent back.

It started to worry us even more and his appointment couldn’t have come at a better time.

We finally had an appointment for July 2021 and we felt like we were finally getting closer to some answers. The pediatrician we saw had promised us many tests including X-rays and MRIs to get a diagnosis in a few months.

I had complete faith in her and the NHS system and we patiently waited for her appointment letter to arrive in the post.

As the months passed, my husband began to wonder why we hadn’t heard from her. I told her to be patient and we were most likely on the waiting list and things were most likely moving slowly due to Covid.

Several weeks have passed and our patience has hit rock bottom. It was getting painful to see Saif standing like that. We made the decision to be referred privately and our GP helped us with this.

Saif really started trying to get up, but his foot was just weighing him down.

He made full use of his butt mix and became a pro and started playing with his older brother. Even my eldest son always asks us when will Saif start walking and running with him. It breaks our hearts.

It was late November 2021 when we finally got an appointment to see a doctor privately at Spire Hospital.

The doctor was furious to hear about our long wait and told us we shouldn’t need to see him privately as it would have to be funded by the NHS. He kindly referred us to many specialists.

Little did we know that a few weeks later when Spire Hospital tried to contact the pediatrician we saw in July, they had lost all our paperwork and the pediatrician we saw had left the clinic. This made us so angry!

If we hadn’t gone private, we never would have discovered this. There was no referral made by the pediatrician in the first place. We felt like everything was a lie.

Luckily we were referred to the NHS by Spire and further appointments were sent to us where our concerns were eventually taken seriously and we were listened to.

It was only a few weeks ago that we managed to get our first x-ray at Hull Royal Infirmary and it showed that Saif’s foot was in spasm causing him to bend backwards.

The muscle is very weak and is not able to support much weight.

Because of the way he started to stand on his foot, his bones moved a lot. All of this could have been avoided with a simple treatment when he was born. It breaks our hearts but it cannot be changed and we can only move forward and resolve what has been ignored.

We have many more appointments coming up for Saif’s foot diagnosis, but due to everything we’ve been through, Saif now needs a lot of extra help and care on a daily basis.

He wants to be carried a lot because even when he bum shuffles he has tremendous pressure on his foot. We can only hope for the best and keep pushing for more answers and treatments.

Saif’s state of health and the experience we had – and are still going through – had a significant effect on us mentally. No parent wants to see their child suffer and we want to do everything we can for them.

However, despite everything, we couldn’t be more proud of Saif, because he tries so hard to get along with everything like any kid his age.

He is always smiling and laughing although the spasms in his foot happen almost once every five minutes, that never stopped him from being the cheeky little monkey that is Saif.

Get the latest updates from Hull and East Yorkshire straight to your inbox with the free Hull Live newsletters.

You can register very simply by following the instructions here

We were blessed with private care, but my heart breaks for people who may have had a similar experience to ours and are still waiting for answers.

A City Health Care Partnership spokesperson said he could not comment on individual cases, but added that he would encourage parents or guardians to contact the customer service team if they needed help. lift anything so the team can examine it.

Get the latest news straight to your inbox by signing up for updates here.