*Trigger alert. GBV
I am a doctor who can’t stand the living or the dead. That’s why I majored in Clinical Pathology. Samples and specimen are my patients. To amuse myself, I give the sample a name and a face. I build them a life, a personality. And then I try to figure out what disease process could be ailing them.
Being the first born and only girl in a family of three children, I grew up in the city under the canopy and watchful eye of my folks. After graduation from Med school, I sought liberty and moved to a town called Mombasa; 500 kilometers away for my internship. The freedom was intoxicating.
It led me down a self indulgent path that culminated in a chance meeting with my future. A gentleman whose eyes climbed all over me when he first saw me. When he spoke to me, there was a smooth, almost soothing quality to his speech. Ours became a whirlwind romance that escalated fast.
I would tell him, “I have never been with a man like you before,” but the truth was I had never really been with a man at all. We dated for a couple of months and then I got accepted for the Residency program in Clinical Pathology. It meant I had to move back to the city.
It may have been the impending distance between us or the hormonal surge the coastal weather causes, because before I left, he proposed and I said Yes! I was 28 years old then so we agreed to wait two years to get better acquainted and then get married.
The two years became 6 months. We ended up having a shotgun wedding because I conceived.
The first half of the pregnancy was uncomplicated. Which was a blessing since I was now a Resident with a hectic schedule.
Then one morning, when I was about 22 weeks, I couldn’t zip up my skirt. It’s as if the baby had had a growth spurt overnight. The previous day, my abdomen was hollow, the next there was an obvious paunch that expanded with every passing day. When I got to 28 weeks, my abdomen begun to clench and unclench itself in regular intervals. It was so uncomfortable I checked in to the hospital for a consult.
The doctor checked me and said, “You are having preterm labor.” They ran tests and started me on meds to try to stop the process.
“Your blood works are all ok. But the scan has shown excess amniotic fluid. All the baby’s organs are normal but she is small for her age.” The doctor told me.
“What could be causing the excess fluid?”
“It’s not clear so we will keep doing serial scans.”
The contractions ceased but they kept me in hospital for a week. After a second week of bed rest, I was ok and went back to work.
Four weeks later, the contractions began again. By now my whole body was my abdomen. I was a fluid filled roto tank. To carry that load, I had to walk as if I had hot coal between my thighs. Even the nurse who admitted me thought I was full term until she looked at my antenatal card and saw I was only 32 weeks. This time the labor was a train that had left the station and the maternity team was left trying to play catch up. Before they had time to plan my mode of delivery, I was 8 cm dilated.
“Dr. Peris, this baby is coming whether we like it or not,” the midwife told me as she wheeled me to the delivery room.
“I am not ready. There is so much I haven’t done. I have not bought a single thing!” As if this information would make her backtrack.
An hour later I was bearing down, cloaked in sweat. I heaved a few times and my daughter slid out of me howling like a bulldog bat.
‘What an arrival!’ I thought to myself. I was worried about what complications she would have as a preemie but at least her lungs were intact.
Except…
Hers was the only sound in the room. It’s as if everyone else had evaporated.
“Can I see her?” I asked, trying to raise my torso. One of the nurses gently pushed me back down on the bed. No one spoke. “Is anything wrong? Am I bleeding?” I tried to get up but was nudged down again.
“Let’s get the placenta out then we will bring her to you.” A voice pierced the silence.
Time passed and the staff tip toed around me reverently avoiding eye contact. They spoke in whispers as if we were in church.
Before I could ask to see her a third time, she was brought to me. “Oh my baby,” I smiled as I unwrapped the linen around her. Then I gasped!
I am not sure what I saw first; her single serpentine eyebrow or her microscopic head, her absent forearm, or her lack of fingers. She only had thumbs on both hands; if you can call them hands. Her arms ended abruptly at her elbows as if God was forming her and forgot to finish. The abnormalities were glaring! Like nothing I had ever seen. She had a huge splitting gap on her upper lip that extended to the roof of her mouth and I just stared at her in shock!
Before I could absorb this, her pink hue started to turn blue and the nurse said, “We need to put her on oxygen. And you need to rest.”
Even as they wheeled me back to the ward the prevailing thought in my mind was, ‘My experience of delivery will forever be ruined from now on. What were all those anomalies!'
My mum came and was shown the baby which worked well because she became my first line of defense against visitors. I truly needed to rest. Not because I was physically tired but because I was mentally jarred! How was this missed?
As I slept my husband — who had been unreachable until this point — appeared at the ward and met my mom first.
“*Kevin, Peris is ok but there is something you should know. Things did not happen as we expected,” my mom started to tell him, “the baby has certain…challenges.” She proceeded to describe in detail what she had seen. She didn’t get very far in her description..
“What are you saying? These things don’t happen in my family! What is this?” He asked no one in particular his voice several decibels high.
“Kevin, this is not…”
“No. I want nothing to do with this matter!”
He marched to my bedside and woke me up.
“Peris? What is this I am hearing?” He was beating a path on the tiled floor pacing back and forth in my room.
“Where were you?” I asked him a little loopy from sleep.
“I had to go in to work to ask for permission to be away.” His tone was clipped.
“You couldn’t do that on phone?”
“And what is wrong with the baby?” It felt like I was on a hot seat being asked to explain what ‘this’ was.
“I don’t know.” I didn’t beckon the tears, they just came.
Meanwhile the baby was not doing well. They had inserted a feeding tube for her to feed but she was not retaining anything.
The following morning I went to the nursery to see her. Lisa — as we named her — was no bigger than the palm of my hand. The Paeditrician who was there told me, “If we were only dealing with prematurity, things might have been easier. But in light of these malformations, we need to carry out several tests. You will need to consent to some of them. We asked your husband but he wanted nothing to do with it so….” her voice trailed off as if she had forgotten what she wanted to say.
“Ok. But what condition is this?”
“We don’t know yet. That is why we need to investigate.”
So they tested her. Searched every corner of her little frame. And only found a mild heart defect. Nothing to point out what brought this about.
It’s only after wide research that the Paeditrician finally clinched it. Baby Lisa had Cornelia De Lange Syndrome. For all the reading I had done in med school, I had not come across that disease. Yet she fit the profile to a T.
In a few days, Lisa became stable, so I opted to go home and become a daybug mom. Kevin still refused to be on board. At first I thought it was the initial shock that made him so cold but as the days progressed and he was a no show, I knew I was on my own.
I would leave the house at 6am to bring her milk. Then I would go to the lab from 8 to 10 am; because I still had to cover my Residency hours. Then back to nursery to pump and for kangaroo care. I would pass by the lab briefly in the afternoon then back to nursery until 8:30 pm. Head home to cook and clean. Repeat.
Back at home, Kevin and I lived in an expanse of silence. I couldn’t take it. The environment was toxic for me so I asked him and he allowed me to go home to stay with my mom.
After observing me for a day or two mom said, “Peris, you can’t carry on like this. Let me help. You do what you need to do during the week, then on the weekends just give me the milk and I will go stay with Lisa as you rest.”
We did this week after week until Lisa started to gain some weight. But each time we would celebrate a milestone, something would happen to set us back. She would gain a kilogram then an infection would set in and she would lose two. One moment she would be off oxygen, then a fever would drape her and she would be back on oxygen again. It became a dance of wins and losses. You just never knew what to expect.
Six weeks in however, she started to show remarkable improvement. She was on very little oxygen and was now 1.8 kg. The doctor said, “Let’s give her one more week and see. If she continues like this, we can start prepping for discharge.” So I started to shop for items that I would need to care for the baby at home.
That weekend, my mom stayed with Lisa and all was well until Monday morning when I took over from her.
I found them waiting for me. My colleagues in the Paeds department.
“Peris, Lisa has developed abdominal distension. Her oxygen SATS have dropped. We are thinking of intubating her.”
“What? She was ok over the weekend!”
“Yes but with preemies things can change in a snap. Her kidneys are also not doing well. We did an x-ray that showed her intestines have become necrotic.” My heart sunk. I thought we were heading home.
“So now what?”
“So,” the Paediatric Surgeon chimed in, “We want to go to theatre to see if we can excise the dead gut. She is very sick though. She might not make it out and even if she does, the recovery process will be long.”
“There is a huge possibility that even if the surgery goes well, she may not reverse from anesthesia,” the anesthetist added. “We need to inform you so that you give consent.”
I felt like a child at a buffet. I did not know what choice to make.
“Do it.” I said to them after tossing the thoughts in my head. I was her only advocate at this moment. I had to give her a fighting chance. It was either that or nothing. “How long will the surgery take?”
“I can’t say. We will only know once we are in and have assessed the extent of the damage. I wouldn’t advise you to stay around. You will be anxious. Go home. We will call you if we need you,” the surgeon said.
At 8pm they took her in. I watched them wheel her in her incubator, her chest rising and falling, her abdomen swollen like a balloon. She really did look sick. Not like the Lisa I had left the previous Friday. I went home carrying my anxiety with me, lay down and chased hopelessly after sleep but didn’t catch it.
At midnight, my phone rang. I took in several breaths then answered, “Hello?”
“Peris,” It was the anesthetist, “Things are not as we expected. A large portion of her gut is damaged. There is barely anything left to save. She is alive but her kidneys have shut down, her heart is struggling…We can close her up and keep her on life support until morning, so you can see her or we can let her go. There is nothing more we can do.”
I sat up in bed my heart smashing against the walls of my chest, “There is nothing more you can do,” I repeated. I don’t know if I was asking them or telling myself. “Let her go. She has suffered enough.” That’s why I hated this side of medicine. The social — human side. This was my baby. She was not a specimen I could create a life around. And she was going — gone. I know some will wonder why I didn’t want to keep her until morning but I wanted my last memory of her to be from the last Friday I saw her. I called my husband and told him, “Kevin, Lisa is gone,” and after a beat of silence, I hung up.
The following morning my mom and I went to the hospital. “Do you want to see her body?” They asked me.
“No.” But my mom went ahead.
“You can choose to leave her with us or take her and bury her. What is your preference?”
I called Kevin and he said, “Do what you like.” So I opted to have a private funeral with close family and friends.
Until then I had never planned a funeral in my life. Sad, that the first funeral I was to plan had to be for my baby. I only got so far as picking the coffin. Then I couldn’t take it. My mom did the rest.
Lisa was buried two days later dressed in the clothes she was to be discharged in.
On the day of the burial, Kevin came looking dapper in a black suit and opaque sunglasses. He placed his hand around me during the burial and it felt more like a weight on my shoulder than a show of comfort. I did not view Lisa’s body. He didn’t either. And it hit me he had never laid eyes on her since she was born.
After the burial was over his hand still laid claim to my shoulder, “Peris can we talk?”
“Now?”
“Yes. Now.”
“I really can’t…”
“Peris we need to talk. Please.”
We walked aside and he said, “Peris, the day Lisa was born I was in shock. I was not myself. Honestly I did not expect it and I am sure you didn’t either. In fact, you took over so competently I didn’t feel I had a role.”
I did not have the energy for this. All I wanted to do was crawl inside a hole and pretend the last six weeks did not happen. Yet I mustered the energy to ask him, “What choice did I have other than to take over? You checked out! What if we both checked out?”
“Then the hospital would have dealt!” I winced at his words.
“Peris,” he turned me to face him, “she is gone now. We can have a new beginning.”
Too weak to respond, I walked off, my legs struggling to hold my weight up. I joined my family and we went home.
But Kevin did not relent. He called me daily, “Come home Peris. We need each other now.” He would argue his case and in the midst of my grief, waves of reasoning would flow through me. ‘People are different,’ I would tell myself, ‘people handle stress differently. Surely I can’t judge him for that.’ The reasoning would eat at me little by little wearing down my defenses.
A week later I moved back to my matrimonial home.
I went back carrying a bag of expectations. I wanted us to sit and debrief the past two months. But each time I brought up the subject of Lisa he would say, “Why are we talking about the past? Let her rest. If it’s another child you want, we can have one.”
Muffled, I sought counselling services at my place of work but for some reason, I never connected with the counsellor. After a few sessions, I abandoned ship. I felt like a tangled ball of thread. I was dealing with residency, unresolved grief and marital stress. So I did what I usually do when I get overwhelmed. I packed my emotions in a box, threw it at the back of my mind and carried on with my life at the Lab. I thought things would somehow get better but they didn’t.
One morning, while running late for work, I mistakenly locked him in the house. Usually, he would leave the house before me so my routine was to lock up and leave. On that day he was still in the house when I left. On autopilot, I forgot and locked him in. I didn’t get very far before I realised what I had done and went back. I found him fuming, waiting for me.
“Peris! Do you know how late I am for work?”
“Sorry Kevin it was not deliberate, I just…
I was not talking anymore. My head had turned violently to the side, my hand pressed against my cheek. Wait a minute…had I just been slapped?
My thoughts ran jumbled through my head as I turned and ran to the car. I drove to work crying the whole way. The slap happened so fast, I almost believed it didn’t happen. Even as the shock of it hit me, a voice in my head said, ‘There has to be something going on. It’s the grief. He is stressed.’ I turned around and went back home aiming for some explanation.
I found him there.“I don’t understand why you slapped me Kevin. Is there something going on? Something you want to tell me? I just forgot and locked you…” I stopped mid sentence because of the look on his face. It was twisted in the most hideous agony as if he was withstanding some kind of pain. “Kevin, what is it?”
He closed in on me, his footsteps slow and deliberate and muttered something under his breath but I didn’t catch it. “Huh?” I asked and he responded with his fist to my face. Pain shot through the corner of my eye. I started shaking my head in fear and disbelief as he hit me on the head and face several times like you would a man who has stolen your wife. In between the blows I would look at his face and watch as his hand would curl into a fist and connect with my head again. He was a stranger.
Everything shattered after that. My heart, my soul. Shattered like broken glass. I did not know it was possible to feel this broken. I was still shaking my head wanting the last few minutes to go away. Minutes. That’s all it takes to completely change everything about a person. Minutes that we’ll never get back.
I left and went to my parents house where I stayed for two months. I did not tell them what had happened. They assumed we were having a tiff because of the loss of our child.
After a sliver of time had passed, he started to call me. “Peris, I am so sorry. I miss you. I love you. You know how the situation at home was. Stressful. And you were adding to the stress. You are always so sad. Always wanting to talk about the baby. You don’t seem to want to move on. I was just so stressed. Please come home.”
“You beat me. You hurt me,” Yet even as I said it I knew he had a point. It was stressful for both of us and I had been mopping around the house depressed. But how could I go back to a man who was hitting me? A hurt bird always returns to its nest, a hurting woman no different. And just because someone hurts you doesnt mean you stop loving them.
So I went back.
It was now eight months since Lisa had passed on and most people kept telling me, “Have another baby. You will feel better.”
So I did. I conceived almost immediately and my anxiety levels shot through the roof. I had just added anxiety to depression. I would do ultrasound scans almost every week, counting fingers and toes. I did not know how to relate to my second pregnancy. So I did not prepare for fear of getting another loss.
At home, the incidences continued to happen in varying degree. Once, I forgot to pick his suit from the dry cleaners and he backhanded me and I knew I was getting damaged when I started to reason and say, ‘At least it was just a slap. It’s better than being punched.’
Another time the beating was so bad, I ran to the kitchen to lock myself in and he followed and hit me countless times. Later he said, “I am sorry. I thought you were going to the kitchen to get a knife, so I had to defend myself.”
Still, I stayed and we went on to have two daughters after Lisa and never mentioned her again. We behaved as if she had never existed. But our relationship was coming apart at the seams. I had become jittery and easily spooked.
One day we had a tiff over money — some cheques I had not cashed. The tiff escalated to violence and Kevin beat me up in front of our girls. It was so humiliating. What brutal education was this for my daughters? I had reached my limit.
The following day I packed up and left for my parents house. And this time I told them what had been happening.
They held a family meeting to have a discussion and I will never forget when one of Kevin’s uncles asked him, “If we allow her to come back will you beat her again?”
“I don’t know. If she annoys me again, I am not sure what I will do.”
The silence was so thick you could bottle it and sell it.
We all have a limit. What we are willing to put up with before we break. Before I got married I thought I knew what my limits were. But slowly with every incident my limit was pushed a little more and then some more. Every incident would chip at my limit and every time I left and went back it became harder to leave the next time. Eventually I lost sight of my limit because I started to think, we have lasted eight years, what is eight more?
I never went back.
But I still carried a lot of pain in my heart. When I turned 40, I had a deep sense of failure and I wanted to get to the bottom of my unresolved feelings. I was hoping to understand how we got there. How a previously kind and non violent man had become this person before me. So Kevin and I met and agreed to see a counsellor. That was the best thing I did for myself.
Whereas he thought the counselling was for us to reconcile, I did it for closure. He expected it to be a beginning but to me it was my ending. It became clear to me that I chose wrong from the very beginning and ignored huge flapping red flags. Leaving was a good thing. For the first time I spoke about Lisa and what the delivery, her illness and her loss did to me. I emptied myself in that counselling room.
Child loss never really leaves you. For every year that passes I think, Lisa would be this or that. She would be 16 this year. One would think, but you got two girls! And I am grateful. But human beings have no spares. We don’t have duplicates somewhere so that when you lose a baby, you just replace them with another. It’s a big misconception.
The counseling opened my eyes to the fact that Kevin had always been this way. I had just joined a long list of people who would make excuses for him and this permitted him to continue seeing himself as a good man, who kept getting provoked into acting outside of himself.
“But you left me over just two incidences.” He said in one of the sessions.
“Two? They were more than two! Do you remember this scar?” I showed him my leg.
“No. I didn’t do that.”
I filed for divorce. And as hard as this choice was, I chose to break the pattern before it broke me.
This is Dr. Peris's story — her past is now just background noise.
Cornelia De Lange Syndrome ( CdLS) is a very rare developmental disorder that affects many parts of the body. It can be inherited or can occur in people with no family history of the condition.
Symptoms: Heart defects, Intestinal problems, Slow growth before and after birth, skeletal abnormalities of the arms and legs, small head, eyebrows that grow together in the middle.
The diagnosis is usually based on signs and symptoms. Genetic testing can also be done.
Children with CdLS can live to adulthood.
There is no cure but supportive treatment can be done.