People with disability need healthcare too; accommodate them

Being a doctor means signing up for life-long learning that continues even after you graduate. Nevertheless, some doctors practise to a ripe old age but never get to see some of the amazing conditions they read about in medical school. One of the memorable conditions for me to date was attending to Nduku*. As I walked to the operating theatre, a nurse told me that the patient from the labour ward who had been brought in for emergency caesarean section was ready for surgery, but I should have a private chat with her before she was wheeled in.

Nothing had prepared me for what I saw when I walked into the receiving area to talk to Nduku. She looked like a five-year-old on the bed. She was all of three-and-a-half feet tall. The hospital gown was so big, the nurse wrapped it around her as if she was swaddling a newborn. Nduku’s big brown eyes were fearful and close to tears. She was 23 years old and suffered from a genetic condition called achondroplasia, which is a disorder of bone growth that leads to disproportionate short stature.

However, unlike most people with achondroplasia whose faces appear adult, she had retained a delicate child-like facial appearance, which at that point, coupled with fear, looked like a nine-year-old’s.

Achondroplasia may be inherited, or may result from a new mutation of genes that result in abnormal development of bones. This is obvious in the limbs, which are short, relative to the body, and a resultant big head. Adults with achondroplasia grow to an average height of 4.5 feet. They have normal intelligence but may suffer complications such as spinal cord entrapment, causing muscle weakness and abnormal sensation; or hydrocephalus, when cerebro-spinal fluid accumulates in the head.

Nduku had normal-size parents and had accepted that she would always be small, but that did not stop her from yearning for a normal life and wanting to experience motherhood. She did not reveal much about the father of the baby, other than the fact that he wouldn’t marry her, but she was happy to be a mum. Her miniature size made it impossible to have a normal delivery as her pelvis was too small to allow passage of the baby.

Her pregnancy had caused a major uproar in her neighbourhood and despite her best efforts to ignore the snide remarks behind her back, she harboured a deep-seated fear that some of the things whispered about her unborn baby could be true. She had attended very few ante-natal clinics and never twice at the same place, therefore, she did not benefit from proper care, but so far so good. She had made it this far without complications.

Now, a few minutes away from meeting her baby, Nduku was suddenly worried. She feared that her baby may be born with abnormalities that would make life difficult. At best, she hoped for a baby whose worst disability would be what she had. She reasoned that it wasn’t possible, with her condition, to sire a healthy baby who would never know the feeling of exclusion she faced daily in her life.

The operating room team came together for Nduku in an amazing way. We reassured her as best as we could in the limited time we had. She was given VIP treatment all the way to the operating room and she calmed down. I saw a tender side of the men in the room I had never seen before as they handled Nduku like they would their own daughter.

The surgery was not without challenges. The anaesthetist had to use paediatric-sized equipment and ensure appropriate drug dosages in keeping with Nduku’s size and weight. We were also unable to offer her the spinal anaesthesia she really wanted, so she could see her baby immediately she was born. She had to go under general anaesthesia which would render her unconscious during the surgery.

Extracting the baby from Nduku’s small abdomen was no mean feat, but she announced her presence to the world with a loud reassuring wail that left us cheering. She was 2.3 kilogrammes but perfect in every sense of the word; all 10 toes and fingers, and limbs as long as they should be. Her perfect round head was covered with a mop of black curls and her heart beat was like music to our ears.

Nduku came out of anaesthesia and all she could do was weep with joy. She had a perfect baby and in her world, that was a miracle worth living for! She reminded me how often we take things for granted, even at the workplace. Do we remember to create an accommodating environment for patients with physical challenges?

We need to create space for these men and women to feel welcome and comfortable in our facilities, when we address their reproductive health issues. It is tough for them to make a decision to be parents, so from the very outset, we must make them feel supported in their journey. Our clinics must be tailored to address their questions, fears and challenges from conception to childbirth and beyond. Our wards must make special consideration for their mobility around the units.

Let us start with the basics; every facility must provide a sign language interpreter because deafness is the commonest disability encountered in our maternity units!