Denise Kekimuli on Pregnancy, Miscarriage & Perinatal Death

#360Mentor is a continuation of the #40DayMentor series. In this episode, Robert Kabushenga (RK) speaks to  Denise Kekimuli (DK) on Pregnancy, Miscarriage & Perinatal Death.

RK: It’s good to have you on #360Mentor Kekimuli!

DK: Thank you, I am happy to be here.

RK: The story of making every baby count, what’s that?

DK: So until the first lockdown, there’s a program that UNICEF started called Every Newborn Action Plan (ENAP). Still birth hadn’t been counted as relevant in the whole maternity programs. So last year they started a program called ‘make every baby count’.  They called upon organisations working in that area and people who could have lost their babies. It became more of our mantra to count every baby because generally babies who pass on before 20 weeks are not counted which is really sad. There was no paper or nothing given to you to acknowledge loss of a baby. You’d be so lucky to be given a scan. Some people do not even get to know they are pregnant until they are like seven or eight weeks. Some women come to us when they are already 5 months pregnant.

RK: I want to ask you something; you said you are trying to deal with the silence around this thing. What is this that you are trying to deal with?

DK: This is what happened to me. I will focus more on the second loss and not the first one. I am still dealing with the first one right now.

RK: Let me contextualise this. This is where we should have started in fact. You talk about grief and how you have had to deal with losses. Before we go into the details about the loss of your babies, would you want to tell us about grief?

DK: I come from a family where I have only known one uncle. Of all the seven siblings of my father, only two are alive. The others passed before I was born. My mother passed on in 2014. The loss of a mother is like being thrown into the amazon and you have no compass and they tell you to find home. The problem with this death thing is that you don’t know it until you go through it. Death is inevitable.  Death and taxes are always going to be there. The only difference is that there is a whole authority on taxes but we tiptoe around death.

RK: Someone always reminds us, none of us is coming out of here alive.

DK: That loss literally knocked me out. I was in a state of not knowing what to do but also having nowhere for a referral. I grew up in a home where for every question you asked, you were referred to a book. My mother was a lecturer and my father a Professor. That’s how we were raised. There was never an easy answer. The grief of the loss of my mother really played with me and my siblings. When we do memorials, you can see we are still struggling. Everyone went into their own nook.

RK: Even now listening to you, I can tell.

DK: It’s a hard topic. I felt like my best friend had gone.

RK: I don’t know whether this is of any consolation to you but my mum died 21 years ago and three months ago, I tried to give a speech about her and I failed.

DK: It really does not get any easier.

RK: It doesn’t. We just push it at the back of our minds and feel like we have gotten over it but  we never.

DK: At the last memorial, it’s where I wondered why of ones’ parents, especially the mother- she is the only person who can love you unconditionally – have to leave you alone. It’s like they leave you completely naked. It’s something I need to completely deal with.

Immediately after, in 2015, I got married. To date, I have no recollection of what happened between. In 2016, I decided to find myself. My husband and I had been on and off for eight years. He is Kenya and it was a lot of back and forth. This was the first year we were living together.

In 2017, we decided to have a child. I had already had my first born in 2009.

RK: I like your description in the write up. You said you came back home with a degree in one hand and a baby in tow. One of my mother’s friends told me she used to tell them: Kekimuli returned with a degree and a baby. For it was hard to imagine. I had not planned for it either. I found out later on that she was happy.

RK: You went for enjoyment and got more than you bargained for.

DK: You know those things where the enjoyment enjoys you. That’s what happened. I was not ready.

RK: So you already had a baby, anha?

DK: I thought this was going to be a walk in the park. In January, we started trying and conceived. For me, once I conceive, I start calling you by your name. I don’t want this baby baby business. You should have a name already. They should already have a name so that by the time they come out, they already have a name.

When I had James, I was like this is fantastic, we are going. We went to the doctor for a test. I am very particular about the first scan because it tells you the position, normality that is going on. We got to the clinic and the sonographer is asking questions and a lot of questions. But he was asking questions like, when did you last feel movement? Then after he told me to go and wait.

In the office, before I could even sit, he said “this pregnancy is not even viable”. You know how you second guess your English? In my mind I was like I don’t know what that means in science. Does it mean the same thing in English? Is there a difference?

RK: Wait, just like that?

DK: Yes. just like that. It was so heartless. At that point I was trying to figure out what was going on. Then he was like we need to do an evacuation.

RK: Hold. First it is viability and then evacuation?

DK: I was wondering; where are we going? What’s happening? When I get shocked, I get that sound that used to come on UTV and the end of the program. I couldn’t hear the doctor. I couldn’t hear myself. It can’t be what she is saying. I stood to leave and go and seek a second opinion. As I was leaving, she was giving me a prescription for a pill to take that was going to help me basically start the process. I was there with my sister, our first born who is 15 years older than me. She is the kind of person who is present in every situation. I handed her the papers. I told her “James is not viable”. She was also confused. We came back home and confusion was reigning.

My husband suggested we go for a second opinion. My gynaecologist is also my Pastor.

RK: Oh! Oh!

DK: He is a spirit led gynaecologist. Just amazing. On this second opinion, I was calm. I had hope that this guy knows what he is doing. We went in for the scan and he told me, it’s a bit of bad news but we are going to handle it. So he tells me; “this baby seems not alive. There is no heartbeat.” That statement hit me hard. He went on to advise that I go home and prepare for evacuation.

Let me tell you Robert, evacuation is a whole process. He gave me a pill to take that would start the process. While I was still trying to get around everything, James decided to come out. I was seated and I felt a push.

RK: No way!!! Just like that.

DK: You know you men are the worst freak-outs. My husband freaked out. So I told him to call the doctor whether I should take the tablet or leave it. The doctor, Emma Okullo, said I should take the tablet to push everything out.

I had never thought of such a thing. When I say I am still dealing with my first loss, you know the bathroom bowl is white then it turns crimson.

RK: Wow!

DK: That’s how much came out. I was like this one was seven weeks. That was the worst month of my life. I was in some kind of state. I didn’t understand what my body had just done to me. One of my best friends had just given birth and she had also just had such an experience before. So I went to her. We sat together and cried. Later she gave me an ovulation stick and the app and told me to go and plan.

We started taking prenatal, vitamins and supplements. It was too much. I remember my husband looking at me. He said this is circus, you can’t just try to fix what has already happened. To me, I felt that he was not feeling what I was feeling. I was too mechanical about  the whole situation, I didn’t even allow him to deal with his own pain. I remember one time I served him a meal and he refused it. He insisted that it was going to come naturally. But I couldn’t take it. I had just had a miscarriage and I needed a baby. Another baby. This is what my brain was telling me.

RK: Was it driving you in some kind of desperation? Would you like to describe that?

DK: It’s your body giving you a rejection letter. I have a fighter mentality. Other people give up. after a miscarriage, they give up. Some people turn to alcohol and drugs. Others stop caring for themselves and numb that emptiness. That void. You actually enter a state where it is mind over heart. It’s really bad. Your mind tells you, there is logic to this. But your heart insists; I need to feel this pain and move on. The questions are always more than the answers.

Scientists have not done research about it because there is huge denial. There is a mother who came to us who still believes they gave her a dead baby. They swapped her baby.

People talk about those stages of grief but they can all come to you in an hour; anger, depression denial. The mental effect it has on you is really huge. But because we don’t see the emotional wounds, I can look pretty out there but when you know what you are going through. I was looking okay. It was only my husband who knew my real madness.

RK: Tell me something, how was he processing and dealing with this whole situation himself and then supporting you?

DKE: I don’t know. That’s how much grief I surrounded myself with. I could not see him at all. And this is the problem. It’s like having two huge balloons and each one is trying to occupy space.

Do you know Alan Kasujja?

RK: I know him, he is big, tall and dark. When he enters a room, he takes over it.

DK: When he enters a room, he owns it. That is how grief is. It comes and takes over. It swallows you up if you don’t address it. That’s what happened the first time. The second time, he blocked me out.

RK: In your story, you talk about reducing yourself to mechanical sex, what’s that?

DK: Let me tell you, it’s a project. As a woman, you have to learn your cycle first. You need to know when you are ready. I did this in one month. James was miscarried at the end of February and Keitangaza was conceived in April. I didn’t want to stay in pain for long. I wanted a replacement. That’ where the mechanical sex comes in because everyone is telling you to just get back on the horse. You do the damn thing. For us it worked. I know other people who have gone for IVF and it’s worse. Imagine the cycle is 28 days but they give you like three months.

RK: So it’s the anxiety and mental pressure?

KE: The whole thing is not even conducive to conceive. Thinking about it now, I just imagine we were mad.

RK: I guess this takes us straight to the story that you wanted to tell us about the second child. What happened?

DK: Once I conceived, I was excited. I went to Emma and he put me on bed rest. This was the worst thing to do to me. I am so physical. I had fear and that was driving my second pregnancy. When I reached seven weeks on four days, that was my worst day. I didn’t move. I tried my best to just stay still. Didn’t do anything else apart from eat. I was like that for the entire pregnancy. Just skeptical. If you don’t feel movement, you get concerned.

RK: The thing becomes all consuming in your mind. You’re not thinking of anything else?

DK: There is nothing. I don’t know how women who go through loss are able to go back to work. Are you being productive?

RK: In all this, you are busy trying to manage A long distance marriage?

DK: No. Now we are here. He was working and I was home. My aim that entire time was to keep the baby safe. I didn’t care about anyone else. I was such a helpless person. If I didn’t have anything to do with her, I was not going anywhere. And imagine, in all this, I had to plan my father’s wedding.

RK: Did your husband have a place in all this or you felt like an outsider?

DK: He’s an outsider. First of all, he’s a foreigner in a country. He didn’t have a separate place to go and vent. I usually see the fathers who come to me. When I tell them to find at least one person they can share with, they are like we are fine.

RK: Those matters you don’t talk about with fellow men.

DK: The question is why?

RK: Some of these things are hard to understand. You don’t want to end up as a conversation somewhere.

DK: So, he didn’t have anywhere to go and vent. He did that thing of pulling himself away. And he did it so well. By September, he was like I am going back home. To me, it was okay as long as my baby was staying back in. If you want to go, go. And he left.

And that literally was the beginning of the end. My dad got married in November and in December my water breaks. There was one more month left.

RK: Christmas came early.

DK: I called Emma and he said, as soft as soft can be; come to hospital and I do a simple scan.

RK: Meanwhile for you, you’re alarmed completely.

DK: In my head, I was like, dude it’s happening. But he was soft. The worst time to give birth is Christmas. Please don’t do it.

RK: Let’s see December, basically, people should not be active in March.

DK: Yes. Be active in January and February for Valentines. Enjoy yourselves. March, just leave it. In December, everyone wants to go for Christmas. I welcomed myself into the hospital. Only the gateman and that was it.

I got to IHK and with their paperwork. We had to tell them we wanted to see Dr Emma. I love Uganda for having to drop names. People who don’t have the Dr Emmas to name drop, what do they do?

So Emma told me the baby was coming and that was fine by me. I thought this was going to be fine. That was the logic. Then Emma started; her lungs are not yet developed. Let me tell you the last thing to develop are the lungs. The first is the anus.

RK: But you girl! Hahaha.

DK: You know it sounds hilarious but you see the baby develops like a tadpole. And even the heart, the skin has to grow over it.

So we had to do the lung thing for three days. On 28th December, I was anxious to keep her in. Around that time, there were many mothers dying while giving birth. We went to the theatre, and the baby came out all screaming. That was around midday. The next day at 2am, I wake up and my breasts are leaking. I ask for the baby.

It got to 3am and there was no response. The nurse comes and calls my cousin Nina who was by me. Her phone kept on buzzing and it came to 4am and she had not returned. While there, they were waiting for Emma to come. When he came, he told everyone to get out of the room. For all the time I have known him, I had never seen him that serious. He came closer, and said, “unfortunately the baby didn’t make it.” That is where I stopped. I demanded for the baby. I wanted to see her. And that’s the thing about babies, they look like they are sleeping. I realised there was no breath. And that is when for me life stopped. It will never be the same. From that moment on, whichever way you try, you will never be the same.

RK: Eh! That was tough. 

DK: It was. But I thank God that I have a supportive family. Meanwhile, the one thing that travels faster is bad news. Wow! We were four people and then we became 100. But Emma put me on meds to rest. He knew I was about to have migraines. There are things which stick in your mind. Like people who get oedema, swelling of the feet, high blood pressure.

RK: My wife got high blood pressure, from then on, it remained.

DK: So yeah. Emma insisted I had to rest. But then I am a people person, I gain my energy by being around people. He had to stop me and to stop the people. Remember my husband had since left. My sisters were planning on what to do next.

My sister and I had been reading books from Harvest Institute run by Moses Mukisa. Most of the books we read had stories of childhood trauma where a lot of things were not explained. I kept telling my sister, I had to bury my child. She ran with that. We had a proper funeral with a service and we went for burial. The only thing I didn’t do was to take a photo.

I always tell people to take a photo. They may not want to look at it at that material time but the time will come and they will want to. I talked about her and wrote a book about her.

One of the times after burial when the storm had settled, I started asking myself what she looked like. I spent like four days trying to figure out what my daughter looked like. My sister told me she looked like Kaylor. And that is the image that has stayed with me. That is what has helped me stay sober.

RK: You said something of how you drowned and drowned and there was no one to rescue you, tell us about that.

DK: You know you are in this alone.

RK: True. Other people go back to their life.

DK: My daughter was buried on New Year’s. On 31st December, my family had a party to welcome the new year. I was in my bed, and it hit me that this life is going to move on and I will be by myself. Now that is the most painful thing. Because you are carrying something that no one is seeing.

You can’t explain it. That’s why I keep saying that until you find someone who is in it, you will only get pity. And you don’t need pity.

RK: So how did you get through this?

DK: I just drank. I drank myself into a stupor.

RK: What were you drinking?

DK: Wine. Wine was my poison. I would drink a 5 litre box by myself in one and a half days. There was a day my brother –in- law left a box with about 3 litres, when he returned he wanted a glass and it was all done.

The thing is that you don’t want to feel. You cannot sleep. Sleep is an illusion. Whenever I would close my eyes, I would hear babies crying. Never mind I was in a place where there were no babies. I was losing my mind. I was worried I was going to be mad over something I didn’t even choose. I didn’t know that I was going through PTSD.

I had a C- section. So I had both physical and emotional pain. I kept telling the doctor that the pain was a lot. He gave me strong painkillers which took me to a place I needed to go. For like a month, I just slept. 

RK: Wait: were you doing painkillers and wine?

DK: Yes. That was my cocktail. At first it was like a buzz. Then it became too nice. And then it became a nice punishment.

RK: Then it became addictive?

KE: I would have it in the morning, at lunch and in the evening. Then in the night. The pain killers would give me a nice sleep and the wine would remove the hallucinations. But it would be a bad hangover once I came out of it.

One day, my daughter walked in when I was throwing tantrums to God and she asked; mummy, are you mad? You’re shouting.

RK: Oh no! And all this time you were still on your own?

DK: Yes. But now I am in my sister’s home. The best thing you can do for someone is not to let them go back to that home where they were pregnant. My sister pulled me away for about three months. But I was dealing with this myself. My husband only came for the funeral and left after a few weeks.

The wine-drug cocktail was perfect. It gave me a high to socialise with people when they came around and a low to sleep and never talk to anyone ever again. That’s how I dealt with this. But after that moment when my daughter asked me, I knew I had to jump out of this mess.

I had come out of it. Mine was complicated grief. I had my mum’s, James’ and now this.

RK: And you’re on your own.

DK: Yes. I was on my own. There was a friend who had gone through a similar experience. She would always call to check on me. She stays abroad and there, they have systems. Here, we don’t. I went to a therapist who rudely told me I had to move on. I was over crying.

Please don’t tell people when they should stop grieving. I just left.

 I started journaling because that is what we were told. My story is all about an account of each day as it unfolded. I decided to write about it because I could not find a book in the African setting. White people’s experience is different. I remember my aunts coming to tell me this and in my mind, I was wondering, why are you telling me now?

It was also then that I found out that our mother had had two miscarriages before she had our first born. On my daughter’s funeral, my dad told my husband that they too had gone through the same.

Later on when I started Vessels, I was like we are going to tell it on the mountains. The next generation doesn’t have to go through this.

RK: Somebody has to end it.

DK: Yes. someone has to say this doesn’t make sense. Someone has to end it. There are even preventable ways. Later on, VESSELS was invited in South Africa to give a talk on how we are helping women and couples. While I was I got all this information on reproductive health conditions and how black women are predominantly born with fibroids. Having fibroids is not a curse. We just have them. We just have to find a way of taking care of them in more ways than one.

RK: Basically what you are saying is that we should have a situation where known complications like our context fibroids, this information should be out there for young people going into motherhood.

DK: Even the men have a role. Let me tell you about the men. My 2019 was a lot of eye opening. I found out that sperm count is real. Male infertility is real.

After your first miscarriage, go with your partner and see a fertility specialist.

RK: Tell me, why would I, as a man, have to go?

KE: Because making a baby takes two. There is an egg and a sperm. The health of the egg is as important as the health of a sperm. Is the sperm formed correctly? Does it move? These are things ignorance has put before us and you find that infertility has been put on a woman. It takes two.

And for the men it is easy. Every 72 hours, you are manufacturing sperm. For us women, we are born with our eggs, every month they reduce.

We don’t have all this information.

RK: From what you are saying, Dr Kasenene keeps hitting on it. The way we feed or behave may affect your sperm count. Is that why you are saying couples should deal with this problem as a couple?

DK: I think that if I am going to have a baby with you, I should know what is happening. From dating alone, you should know the blood group. There is more beyond having sex and getting pregnant. There is a lot you should  know before and after. And some of these things are preventable. I like the fact that the church is now telling couples to do a sickle cell test before the wedding. Can we add to that list, sperms, eggs, tubes. Anything hormonal changes things around you and it affects you.

When I went to South Africa, I did a test and I found out I have PCUA which means I have many cysts around my ovaries. Fibroids are inside the uterus, cysts are outside on the ovaries. That is the number one cause of infertility among women worldwide. And usually it creeps in your 30s.

RK: Tell me about Vessels in Me. What does it do?

DK: Vessels in Me started when I was promoting the book So What Next? I decided that I was going to make all the noise about this thing. We started like 10 women talking about these situations and what coping mechanisms we were using. Generally, it was a support group. Then it started increasing. More and more women started coming in. My brother in law advised me to register it as an NGO to help women. The support group became weekly and I realised there was a need for professionals and therapists involved. We began with peer to peer help, of I have gone through this, I can help you go through it. It then moved to serious issues of “ my husband beat me and I lost the baby”. Those were beyond me.

We started looking for therapists to start helping the women. You know the five stages of grief were actually developed for cancer patients. They were not for us. They have added another one called finding meaning for us who have remained.

 Bereavement comes with having to cope. How do I live my life with this thing within me?

Then we started care packages. I realised that when you are coming into the hospital, you come with something but you leave empty. I reached out to different people who make candles, soaps and small things. I bought journals that people would go home with. As soon as people call us telling us about friends or loved ones that have lost their babies, then we send them a care package. The package comes with information on how to cope.

The fourth is advocacy. We don’t have baby -led advocacy. Once your baby dies, that’s the end. You are on your own. There is also no link between the doctors and the nurses. So we started this to train the nurses on how they can support a mother who has lost a loved one. One time while talking to Simon Kaheru, he asked me, are you teaching kindness? I said yes.

RK: We assume it exists.

DK: But clearly it doesn’t. This package teaches these people how to communicate, how to help the mother.

Then there’s a grassroots woman. The thing is there is a lot of concern about the grassroots woman that we forget about that there’s also our category. We have the same problem. It has not discrimination. It is the same for all women. The worst thing is having money and you can’t find comfort. How do you handle all the trauma in this desperation?

Naava: Seeing us as an insight on how men can deal with these issues, we know men don’t want to talk about things, how would you advise that they are helped?

DK: Men usually listen to fellow men. They tend to address things from the logical point of view. I think she is fine. Men tend to hide their feelings. At our space, we have a package where men with the same issue come together and share with each other and leave it there. They are cool with that. We organise the meetings and leave them alone. They don’t want women there. The good thing is that they find their solutions. The first time we had it we had about 28 men and they all got their solutions from there. Men are fixers. They need information. On the other hand, women want to sit, hug and take tea and it feels good. And she is good to go.

We tell men that anger is not the only emotion they should know.

Mutesi: I am one of the women Kecho represents, how do I deal with wanting to forget?

Fiona Ssozi: I had a miscarriage at 7 weeks, and I am grateful to the support of the doctor. I had an experience of a molar pregnancy?

Shamim Matovu: Is there a place you can recommend where I can go for bereavement?

Matama: When you suffer with a loss, how do you deal with breast milk?

Joy B: How do you help the siblings to cope with the loss of their own sibling?

Tina: We don’t have the language to commiserate with people who have lost their loved ones. Is there an element in your program where you can integrate how to help people who have had to deal with loss?

RK: Kecho, we are short of time, could you respond to the questions online. In the meantime, share with us your last word.

DK: All the questions above are connected. They just show that we don’t have a grieving culture. And I think it was just eroded. It was there before. My dad told me about it, I wonder what happened?

RT: I can tell you what happened. Civil war. Death became such a common thing and we completely lost all emotion. Then we had AIDS. It was eroded by all those events.

DK: For all the ladies, all the questions are connected to grief, how do we deal and handle it? We need to open up and address it. 

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