I AM A MOM, DESPITE MY DISABILITY

The practice of medicine is a life-long education. It is normal that one may practise to a ripe old age of 80 and will still not have seen conditions they read about in medical school and thought were amazing.

My memorable amazing condition was combining motherhood with physical disability. And that is how a regular operating room shift in a public maternity hospital turned into a heartstrings-tugging morning.

I met Nduku* in the operating theatre some years back. The nurse informed me that we had received a patient from the labor ward for emergency caesarean section and she was ready for surgery but maybe I should have a private chat with her before she was wheeled into the operating room.

I was most certainly taken aback when I walked into the receiving area. Nduku looked like a five year old girl on the bed. She was all of three and a half feet tall. The hospital theatre gown was so big, it looked like a tent on her. The nurse had wrapped it around her like one would swaddle a newborn.

Her big brown eyes were fearful and she was close to tears. Nduku was 23 years old and she suffered from a genetic medical condition called achondroplasia. However, unlike most people with achondroplasia whose faces appear adult, she had managed to retain a delicate child-like facial appearance, which right at that point, coupled with fear, looked like a nine year old’s.

Achondroplasia is a genetic condition that may be inherited, or 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. On average, 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, born of normal-size parents, 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 mom. Her miniature size prohibited her from being able 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 could be true. She had attended very few ante-natal care 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 about her baby. She was worried that her baby may be born with abnormalities that would make living difficult. At best, she hoped for a baby whose worst disability would be what she had. She reasoned that it wasn’t possible for her, with her condition, to sire a healthy baby who would never know the feeling of exclusion she faced daily in her life. This is what scared her. She was afraid, very afraid!

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 somewhat 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. Her little size presented unique challenges to the anesthetic aspect as well as the surgical aspect. The anesthetist had to use paediatric-sized equipment for her and ensure appropriate drug dosages in keeping with her weight. Due to her condition, we were unable to offer her the spinal anesthesia she really wanted, which would offer her a chance to see her baby immediately she was born. She had no choice other than to go under general anesthesia.

Her abdomen was small and the baby was all packed up in the little space. Extracting her was no mean feat, but she announced her presence in the world with a loud reassuring wail that left us cheering, all 2300 grams of her! She was perfect in every sense of the word, all ten toes and ten 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 anesthesia 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 of how often we take things for granted, even at the workplace. How often do we remember to create an accommodating environment for our 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. For this reason, 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 and access around the units.

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