Tears and Triumphs Through The Muhami’s Journey with their sons
Sam: I am a 43 year old Auditor working for the National Treasury. Mercy, 38 years and I have been married since December 11, 2004. We have four children; Dennis who is 10, Cynthia, and then the twins Alex and Felix. We experienced no challenges in our first two pregnancies. I attended pre-natal clinics with Mercy and even went to the labour ward for the birth of our second child Cynthia. When Mercy fell pregnant a third time, we thought it would be as easy. At the 7 weeks clinic, we were told that it was one baby, but the sixth month scan revealed that she was carrying twin boys. It was then that we started attending Gynaecologist Dr. Kagema’s clinic. We saw him twice or thrice before Mercy went into premature labour at 7 months. He was the one who prepared us for the possibility that the babies would be born early, and administered an injection that was intended to strengthen the lungs of the baby. We were to go for another but Mercy went into labour.
Mercy: I have never smoked, drunk alcohol, I had no issues with blood pressure and my husband is very supportive and nonviolent. When I was young, I had asked God that when it was time to name my father, He would allow me to have twins so I could name him and my eldest brother at the same time. This was before I got married. I was there for ecstatic when a scan revealed that I would be having twin boys. My father had died while we were still young, and my eldest brother, who is about 20 years older than I, had taken us through school. I never missed a day of school due to fees.
I started experiencing a pain on my right side, and the doctor said my small frame was being taxed by the twins within me. We had been to Dr. Kagema’s on June 22, 2013. He had told me that everything was progressing well with my pregnancy. So when I started having cramps the next day from around 10am, Sam and I were convinced it was not labour. We finally decided to go to hospital at 4pm. I had dilated 7cms already and had they delayed more, I would have had the twins naturally. I was in theatre at 10pm when I delivered them. Actually I opted for it since the babies were so tiny and I did not want to loose either of them through the birth process. They scored high during the birth, they cried well and Alex weighed 1650 grams while Felix weighed 1480 grams. They actually brought them to me soon after birth for a short while before I was wheeled to the ward and then to nursery. The next day, I was in a lot of pain from the operated area so I was not able to see them. Sam however came and told me they were well. I had no reason not to believe him. I was to find out later that Felix was admitted straight into the ICU. He reduced to less than 1000 grames and Alex to 1200grams. Neither of them were able to feed.
Sam: When I first visited them I was informed that the children were very sick. I was also advised not to share this information with my wife since she was still in extreme pain from the operation the previous day.
Mercy: The next day, however, I felt I needed to see them. I steeled myself against the pain, and walked the distance to the nursery. I was told that they were in the ICU as they were critically ill. They took me to see Felix first. I was horrified. He was tiny, and in respiratory distress, each breath lifted him off the bed. I fainted. I did not see Alex that day. The resuscitated me and took me to the ward. I wept and was not able to talk to my visitors. I didn’t think I would ever be able to look at my babies again. After some hours I gathered courage and went and saw Alex. He was helpless and in an incubator. I was advised to express milk, and I tried but could not since I was stressed up. I looked at the other mothers in there. They seemed to have their act together, and easily expressed, and fed their children.
Sam: They prescribed and administered Surfactant for the development of the lungs. It normally costs Kshs, 60,000 for a 10 ml bottle of which they only use 7ml. We asked the staff to keep the remainder for a parent who was not able to afford it for their child. I would visit daily. The children were on I.V.s. Mercy is strong, and would diligently express milk for them as they were not able to suckle on their own. Preterm babies, cannot like other babies, suckle, breath and swallow simultaneously and risk chocking or even dying if they try. She would divide the expressed milk between the children according to the doctors recommendations. They started with 1 ml each through N.G. tubes.
Mercy: They would feed after every three hours. I had to go to the nursery despite the fact that my wound had not yet healed. To check if they had digested the milk we would stick a syringe into the N.G. tubes, and pull it back. If something was drawn from the child it would mean that they were not digesting well. Alex despite being the bigger of the two was admitted into ICU on his fourth day as he had lost weight due to his inability to digest food.
They need also to make smaller diapers for preterms. The smallest pampers almost covered their entire bodies. Huggies had a smaller one that fitted better but was still way too big.
Sam: The back and forth between the ward and the ICU every three hours was depressing for my strong wife. The doctors tested the babies’ blood constantly to see if infections had set in, in order to treat these.
Mercy: KNH has about one nurse to 50 babies so we have to be involved. I would wake up and go clean my babies from that day. I forgot about my wound and have no idea to-date exactly when it healed. They had administered Surfactant to Felix and he was breathing more normally now. Since he was in ICU, the nurses would clean him but I still was the one to feed him. Alex on the other hand had not been able to digest food for four days, and was admitted into the ICU as well. After two weeks, a Professor recommended that he be taken to theatre the next day and be put on a central line. I was depressed. He was the bigger baby, and the one on whom I had hope and now he was scheduled for theatre. I talked to another mother about this and she discouraged me saying that most babies died during the process of this procedure. I wept again. I made three calls to my brother, to my cousin and to my friend and didn’t say anything just cried and disconnected. I then called my Aunt Nancy who is a nurse. She came to see me. She told me that God was able to do a miracle if I prayed. I asked God not to allow the operation but to heal Alex. I did not sleep that night but talked to God about Alex.
The next morning I determined to feed Alex which was not procedural before surgery. The nurses tried to stop me but the doctor finally allowed me to exercise my faith. I began with 2ml, then 5ml, and then 7ml. By the next morning he was taking and digesting all of 10mls. The doctor was amazed and in short, he did not go to theatre. He was fed and eventually put on 600gms. Putting on even 100gms for a pre-term baby is a miracle. I was also Kangarooing Alex, he was jaundiced and was also put under blue light.
Both my babies needed transfusions and my husband and brothers in law had donated blood for them. Bureaucracy made it sometimes complicated for them to be transfused. I remember one day just going mad and going to the nurses station when I discovered that they had not been. I made a scene and they ended up giving them the blood.
After a week Felix was discharged from ICU. One day I was feeding him in the nursery and the nurses came and asked for him. He was throwing his hands and feet. One nurse shouted something like ‘Apnea’. I did not know what that meant. I went back to the nursery after 3 hours and found so many doctors around him. One of them was telling the others that he hoped I would not walk in when I did. My baby was purple. I was shocked. I called my husband, my pastor and my cousin who is an elder. I would call, cry and disconnect. I run to the nurses room and hid under a bed. I cried bitterly calling out to God. He heard me. The now late Nurse Judy came for me. She simply said “Mercy, toka chini ya kitanda. Mtoto ameamka.” Felix was in ICU attached to a machine. His SPO2 – flow of oxygen was almost 100. This was a good sign. He was doing fine. My cousin had been at a Gospel outreach Pastor’s forum when I called. He interrupted his colleagues and they prayed for me without knowing what was the matter.
After this I could go the ICU and find the readings at 70, but as I stood there, they would rise steadily to 100. One mother noticed this and asked if I practised magic, I told her it was simply the power of prayer. I prayed a lot. I sang, and I cried.
One day my friend Grace’ baby who had been stronger than mine died. Not just hers, but three babies around Felix. I was not able to feed him that day. The other mothers were holding me and crying and calling me. Every three hours, a baby would die. They were taken to the Sluice Room. When we came in for feeding we knew whose it was by either checking into that room first or if a nurse called a mother aside to sit with them.
I cried a lot during my time in hospital. I was known as ‘mama wa kulia, na kuomba na kuimba’. One time our couples’ fellowship – Precious Couples visited me. The women just came and cried with me. The nurses were shocked at this. The next day one of them pulled me aside and on confirming I was Christian, read to me from Philippians 4:6-7 “Do not be anxious for anything, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. And the peace of God which surpasses all understanding, will guard your hearts and minds through Christ Jesus.” My now late mother coincidentally visited me at this time, on the insistence of my brothers who were concerned that I could not stop crying. She was 78 years then, a mother of 10 children. She told me that Kikuyu customs did not allow for tears to fall on nursing breasts. I don’t think this is true but it worked – I never cried after this; well not as much anyway. My brothers have never let me forget this.
After this, whenever I was with my babies, I would talk to them telling them that they would survive their beginnings. I would create time between the feeding schedules that lasted one hour for each child to do KMC. My husband was only able to support me in this when the babies came home for hygiene reasons. I was vigilant about accessing my babies to what they needed to survive.
Before we were discharged, the doctors ensured that the twins were able to suckle. Finally August 9, 2013 came round. I was called by a doctor and told I could go home. I was ecstatic. I just wanted to be home and sleep on a mattress. We were sleeping in the Mothers Mess where we shared beds or mattress on the floor by now. I just wanted to sleep in my own bed. I could hardly wait for my husband, my sister Purity and my friend Nancy to get there.
Sam: I paid for most of the general drugs and test while NHIF paid about Kshs 500,000/ to cover their time in hospital. We are not rich but have never lacked for anything. God provides. For instance they were able to use Huggies throughout.
We had chosen Kenyatta National Hospital for the delivery because we had faith in the doctors there, and that the hospital was more than adequately equipped for any eventuality. It proved a good choice but I also think we also played a role; parents must follow the instructions of medical personnel. Upon their discharge for instance, the nurses demanded total hygiene on and around the children. Their room had to be disinfected and the nursing cups washed and handled only by my wife and myself. They were to have no visitors initially as their immunity was low. This was really hard to effect.
Mercy: I would plead with Sam sometimes to allow friends and relatives to see the children. Some came from really far away to see them but he was firm; especially when Felix got an infection two weeks later, and we had to be readmitted for a week. Some people took real offence.
When Felix got sick two weeks later and we had to go back, I was devastated. I refused to pack but somehow when we got to hospital, our things were all packed. He was put in the isolation room, diagnosed with mild pneumonia. Shortly afterwards another baby was brought in diagnosed with menegitis. I cried then but was told the kind of menegitis this baby had was not infectious. I was concerned also about Alex. How would he feed without me? Sam and the nurses assured me that Sam would be able to handle Alex. Still they would fight over the milk I expressed.
Sam: When one twin gets sick at this stage both are admitted along with their mother, so it gets really costly. The sick that is not sick gets exposed to infections and may end up unwell too. To avoid this, I requested to keep Alex with me, and signed him out into my custody. This meant I had to be at KNH thrice daily to get breast milk for him; at 6am, lunch time and evening. The milk needed to be warm. One time, I was flagged down by a police man for over-speeding at night. Alex had been crying and I had his milk. I told the police man to take my car and allow me to get food to my two month old son whose mother was in hospital. The policeman had compassion on me and released me. Sometimes the nurses in hospital wanted to keep the expressed milk for Felix, as he was their priority. We would literally tug over this. Alex on the other hand would through fits throughout the night.
Mercy: Felix was discharged a week later, and thankfully the twins have never been admitted since.
Sam: We were grateful for the care of Drs. Miriam Karanja, Kihara, and Opondo of KNH, but met and have been seeing Dr Ngugi Maina at Kasarani’s Josma Medical Center. Since we were afraid of infections and hardly took the twins out in the sun, Felix got rickets at 7 months. Thankfully these were treated. He had to go through physiotherapy and at some point had straps on his legs. He just begun walking on May 20, this year at the age of 3. Alex had started at 14 months and experienced normal milestones. We learnt from our doctors to never measure our children against the achievements of another child, not even each other.
Mercy: Felix also spoke later, and is now learning to form sentences.
Sam: The twins are both poor feeders. Mercy, who is a qualified accountant, has stayed indoors voluntarily since 2013. We try to feed them as many times as possible. They have even been on appetizers from time to time. One would wake up at night and then wake the others. We started taking shifts sleeping so we could face the next day.
They are fraternal twins. They love being together but fight a lot too. Alex who is older is domineering and manipulative. He is also friendly and remembers faces and names of those he meets. Felix is a worshipper. He loves dance and music. He persistent, determined, focused and strong willed. He is a fighter. Alex fluctuates in his weight whereas Felix keeps the weight he has gained.
We keep two house girls; remember the two older ones are still babies themselves. We had our househelp Cugu who has been with us for 9 years, but needed a new one so we could handle especially the mornings. Initially for the first two months we did not sleep. Our other children understood why we gave most attention to the twins. Mercy’s elder sister Purity was really supportive and lived with us for 9 months.
Mercy: It was hard for Robert and Cynthia initially with me being away for two months in hospital with the babies, and their father trying to cope between home, office and hospital. He would bring them to the hospital to see me from time to time.
Sam: I have a very understanding boss who is also a parent. Understanding my challenges, he would allow me to work on flex time. I needed to be available for all hospital visits and emergencies.
Mercy: Back at home a week later, we were now even more paranoid about infections. We would not take them out of the house. Felix developed Rickets. We found a good nutritionist and were given some powder from the UN called Prampinot I think, and another medicine.
Until they were three years, my life has been a whirlwind. I had physiotherapy with Felix and would cry when they massaged him. He finally began walking at the age of three and is now stringing words together to form a sentence. I can now think about engaging in income generation outside the house.
Sam: We have actually been able to get away twice on our own without the children. For three days each time. It is important for me that my wife is happy and rested.
Mercy: Sam has supported me throughout this journey. We are grateful to God, to the staff at KNH, to our siblings , our pastors, and the very many visitors who came and who sometimes did not get to see me. I was touched by the plight of many of the mothers of preterms. Some were married but were never visited by their husbands. Some of their husbands would encourage them to abandon their babies there – hence the presence of so many KNH babies. Some mothers loose all their babies, like one who remains childless as all her three babies have been preterm. One time a mother stole her own child out of ICU presumably to go throw it away.
On the children’s first birthday we went back to celebrate with the mothers then at the nursery. We had noticed in our time there that they had a shortage of heaters so we gifted them with a few, and brought cake for the nurses. It really encouraged the mothers there to see Alex and Felix. I remembered while there I had wished that I could have a mother come back and just say “Mimi nilikua hapa and these are my babies”.
Pre-term children can survive and thrive. I know one who is now studying at JKUAT, and one who was born in KNH at 900grams and is now a doctor there. Once they overcome, they perform well and are like other children. As a parent, the words you say over your children stick to them. Be careful therefore. Never give up on them – even when the doctors do.
Sam: In the last three years, we have lost four people who stood with us during this ordeal. My father, my eldest sister who even lived with us for a while, My mother and my mum- in law. Its been difficult but we know to be strong. My late mother in law told us at the very beginning that she knew the boys would be well enough to visit her fun and she could see them in her mind’s eye running around. This prophesy has come to pass, many times.