The Story of Titoluwa
First and foremost I want to thank the moderator for the opportunity given to me to share my story, our story from a perspective that probably has never been shared before.
I remembered sending a tweet few weeks ago, asking if we could share our story from another part of the world. I got a Yes! I came across this body when I was searching for information about other preemies and get to know how parents from other part of the globe fare with them and learn from them.
Let me be specific, may be not totally specific so that we will not be losing the importance of this incredible story that has made me believe that Preemies are special creatures in the plan of God. I will be sharing our story, my story from the African perspective. Yes Africa! I will exclude the specific country for now, because I think it is the same malaise that is plaguing most developing nations, except few of them in terms of advancement in medical facilities.
You are our wondering, I said “our story;” I am a father of two, one is almost preemie (I will explain), the second is what we can call micro preemie. Still wondering, this is the father writing? Why not your wife? My wife is fine, doing great, but she agrees with me that she wouldn’t do justice telling the story of the near death experience she had. Afterall, when she was so close to death, I saw it all and felt the trauma. We got married joyfully about 6years ago and a few months after our wedding she was pregnant. We were glad and excited. Without wasting time she started the antenatal appointments, and she never missed any. No cause for concern; the baby was doing great. At about 32 weeks of pregnancy she went for the next appointment, but the doctor said she will not go home. She called me in the office crying that the doctor said she will not be going home because her blood pressure was not fine. Just before I got to the hospital she was diagnosed with pre-eclampsia. This was my first time coming across the word. I began a search party on the internet and reading about it. I discovered that it is a deadly and dangerous condition for the mother and the baby. I was afraid, but I didn’t let my wife know about my discovery of her condition and I managed my fear adequately.
Sadly, the government hospitals are not well funded and the private hospitals are profit driven, but without guarantee of safe delivery. This is the situation I call 50-50, one for life, the other for death. Unfortunately my wife’s blood pressure was not properly managed while in the hospital. A friend called me to move her to another hospital as the success rate in the hospital is very low. I have never been afraid like that in my entire life. Based on my friend’s advice, I had to quickly move her to another hospital, settled the bills as there was no medical insurance from her or my place of work.
Very late in the night we got to the new hospital and we had to register afresh and they quickly opened a file for her, because they had no history of her medical condition. They were more professional and examined her closely and they reconfirmed that she had pre-eclampsia, but they said they will try to see if they can push a little bit. We were given drugs and asked her to go home. That was the night my wife slept best in 2 weeks. But the appointments were twice a week and she was taking her drugs to control the blood pressure. Suprisingly, on one of her appointments the Doctor said ‘you are 37 weeks and I cannot risk it any longer you will have your baby today’. She was induced and our first baby, a baby girl was born with birth weight of 2.2kg (narrowly escaping the incubator). But a big battle of saving the life of the mother was ongoing as the blood pressure was not properly controlled. Thankfully, after spending a few days in the hospital the pressure was gradually coming down to the acceptable level and she was given some drugs postnatal to keep the pressure under control. You will agree with me that this is a close call to heaven’s gate, considering the treatment from the first hospital and the cost of managing the condition for an average young family like ours.
I am sorry I had to bore you with my first child’s story, I just needed to lay the foundation, and it is actually an abridged version of what we went through. I can’t put all in black and white; the emotional breakdowns, despondency and the experiences with some staff who were supposed to give hope and succor.
In 2005 I had applied as a highly skilled immigrant to Canada, when I was a bachelor thinking that by the time I get married I’ll probably escape the rot and the 50-50 chances of bringing a child to life, I saw those neglect from one government to another. I was only joking, as the government (of Canada) said they will be returning the old forms because of the backlogs. I told my wife that we have to continue to live our lives and have a plan B. I asked, when are we having the second child and possibly last one? This was about 3 years after the first child. She reminded me about her experiences of the first child and she thought it was a suicide mission to attempt another baby in midst of the medical trials and errors. Where the facilities are available the health workers are over stretched and this hampered the total commitment. This is not a joke; I’m talking of nations where the ministers and head of states go offshore for simple and minor medical attentions. I think that speaks volumes about the facilities in some of the world’s developing nations.
I told my wife, well said, but we have to move on, the good news is that the programme will be opened again in May 2013, so let’s get ready, do our evaluation, get our documents ready as the Minister of Immigration said that the slots will be limited, but the process will be fast tracked. Man proposes and God disposes, we have got all the documents ready, test of language and the rest. But my wife got pregnant again! It was a mixed feeling that of fear and uncertainties going by our previous experiences and her medical condition that developed late 2nd trimester. In addition I have read that the chances of developing pre-eclampsia again are very high if it had occurred before. At about 19 weeks of the pregnancy she bled and we quickly went to the hospital and the doctor checked the baby and he was fine, but the blood pressure was again on the borderline, but no protein in the urine. She was told to rest and stay away from stressful chores. We began to do the home monitoring of her blood pressure and sometimes it looked good and at another time it would sky rocket. Trust me, one of the characteristics of an African woman is multi-tasking and despite this condition she needed to get to work for the employer will not understand this story. At the next appointment the doctor said that the blood pressure is not improving and he could see traces of protein in the urine. Again! I told myself, but not loud enough for her or the doctor or my 4 year old daughter to hear in the consulting room. The doctor wanted to place her on the bed rest that was 27 weeks of the pregnancy, but I begged him, that no one will take care of our daughter at home and I needed to go to work. He was not really comfortable, he asked me to sign an undertaking, which I did with fear. He gave the drugs to her to manage the blood pressure. The following week was the next appointment, our file went to the medical director an experienced gynecology, he said ‘madam you are not going home again, we need to put you under close monitoring’. Quite a lot of thoughts were bombarding my mind, my first child, the trauma again, the cost, and the life of my wife, as doctor had told my wife that the baby’s chance for survival was 50-50, so I wasn’t really bothered about the baby. In all of these I tried to be cool and calm. My mother-in- law came around and helped take care of our daughter and dressed her up for school while I went to the office and called her at regular intervals. Pre-eclampsia is a condition that can progress and spike up suddenly. The doctor could not push any longer; this is 29 weeks of the pregnancy. The kidneys no longer worked properly and she was swollen, I could not recognize my wife again and I could hardly make sense of her utterances. The protein was already +3 and the blood pressure 190/140. I got there a night before the emergency cesarean section, I was told to come very early the following morning and make a deposit of certain amount of money before they can commence the operation. I could not make it early to the hospital as banks open 8am and I could not withdraw that amount of money from the ATM. They could no longer wait for me as her condition was deteriorating, and a minute longer could make a lot of difference between life and death, more importantly they needed to save her kidneys and total breakdown of the organs that can lead to death. She was asked to sign the consent form and wheeled her into the theater on March 15th 2013 at 29 weeks, 3 days. As I was getting to the hospital they were cleaning for the baby and finishing the epidural process of the c-section.
Our baby boy, Titoluwa (God’s Own) was safely delivered with a birth weight of 0.97kg, right there I asked the pediatrician what are the chances for this boy, he said, ‘let me be honest with you, the child is having 40-60, and 40 is the chances of survival, moreover he is a boy’. Right there I knew we may or may not take him home, it is understandable, there are no facilities to really take care of such babies if there are complications or surgical correction to be done, and we could not afford to fly him abroad because we did not prepare for the situation we found ourselves. He was put into the incubator and put on oxygen and he was able to breathe on his own at birth, which was a surprise for me. I think the shot of the steroid helped his lungs. Honestly, I really did not go to check the baby the first 2 days for we were not sure yet about the state of my wife’s health. Pre-eclampsia if not properly managed can lead to eclampsia, my wife’s pre-eclampsia was so severe that it gave the baby little chance to grow and cut off nutrients to the baby. She was given an assurance that the baby was fine and she will get to see him once her blood pressure is properly controlled. Because they needed to regulate the breathing of the baby he was not given breast milk until about 3 days of normal and acceptable breathing. His mum saw him on the 3rd day but could not touch or carry him. It was another moment of emotional breakdown that had to be managed. I was getting a lot of questions that I did not have answers for and I really felt her pain.
This is the beginning of our 2 months journey after the delivery in the hospital. She had to negotiate a month without pay in addition to the 2 months of maternity leave for her to have ample time with the baby. The longest moment of my life was March to May 2013 when this boy was there in pains and we were not sure if the right things were given at times. Let me take you back a bit on our immigration story, just because we wanted the best for him and his sister and we were hoping if we make it this time we can move on with our lives and have world class medical follow up for him. I was multitasking; I made sure the education evaluation was ready during this period. The government declared the programme open again on May 5, 2013, we were fortunate to get our forms to Sydney on May 23, 2013 and fortunate to be among 300 slots for the category we applied for. Sadly, the form was returned again on the reasons that we should have added the new child to the form, pay his processing fees, and put his international passport. I was truthful enough to put a cover note that this child is still in the incubator, we can’t carry him, but we will be updating our application with his details during the processing period. But it was too late; our forms were already on the way back to our country. I had to really manage this development, my wife must not know about this, she is going through the healing process and this can affect the lactation as well. Let me quickly close the immigration story, because I really do not want to talk about it any longer, because I do not consider the treatment of our case to be fair and it hurts any time we remember. I had to tell my wife after we were discharged ( I will conclude the high and low moments),she felt disappointed and said since the slots are not been filled up, let’s resubmit. We quickly took the child for photo capture and the international passport and we got all his papers and re-submitted the form on the September 11th 2013 and put another cover note. Unfortunately, we were put at back of the queue to be told that the slot has been filled. I took courage to tell her that the form could not make it to the cap; maybe in the future we can try again. Let’s work out our Plan C for the children. Low moment again! Considering the efforts and time dedicated to it. We intend to give it a shot again when the program opens; at least we have started the process now.
Any parent of a premature baby will agree with me that there are high and low moments during this period. While I headed to the office, my wife dressed up for the hospital every single day. The best we could do was to pray for him when we were not there. She needed to get some breast milk and get enough supply before the following day. One of the good signs for us is the hunger pain and he cried for more, but the nurses were strictly going by the instruction in his case file. The weight gain was looking good and progressive not until one afternoon the incubator he was occupying broke down due to incessant changeover of source of power between generator and the government utility electricity company and it was newest and seemingly best of the incubators. The remaining two were not used for a long time and looked analogue. They warmed up the old incubator quickly and tried to put him there, but it was just not good enough. By the time my wife got there the following day, he was back on oxygen again, having been removed from it only a week before. The poor boy was down with infections and was inactive, unlike him on a normal day. He was placed on strong antibiotics and food supply was reduced and he began to lose weight again. It was a low moment.
I witnessed one of the low moments and it is hard to erase from my memory. I got a call from my wife that I needed to come now, she was crying. What happened, I asked, but no word came out. I explained to my boss and he told me to go. I got to the hospital and was told that the boy aspirated (we thought it was an apnea attack because they did not tell us right away) in the middle of the night, thankfully one of the nurses was there as there were no alarms to alert anyone in case such happens. He was stabilized and they had to stop food again. He was looking pale and they discovered that he was anemic. My blood was screened and they transfused him at an interval of 2 hours. I had to be like a walk in donor as that was even better than the blood in the blood bank. It was the first time I felt the pain that I had to move out of the nursery, they could not find his vein to set the drip. I told his mother to go home and look after his sister, as I would be giving them the sample every 2 hours. I was glad she left, because the subsequent procedure was not meant for the faint hearted. They had to look for veins in his head and he was crying with almost zero energy. I gave them the sample for the next six hours and came out of the nursery; it was a sight I could no longer withstand. In my mind, I was saying the worst news will come the following morning. How will his mother take it?
I was wrong. A few hours after I left he was crying for food and they introduced food again gradually, and the following morning he was back and active again. His mum called me and said he is stable now and she was excited. The discharge weight in the hospital was 1.5kg and miraculously at every other day he was gaining and his mother could not get enough supply of breast milk anymore. He was given the preemie formula to supplement. Finally we left the hospital after two months and his mother stayed with him for 2 nights before the final discharge. Looking back and doing side by side juxtaposition of my first child and my preemie, my preemie is surprisingly meeting his milestones faster than his sister when she was at the same age and he eats better. He only goes for immunization and we do not have any cause for concern. He is exploring every day, smiling and full of energy.
Come March 15th, 2014 he will be celebrating his one year (corrected 10 months) of coming to conquer and make a difference to this world and there is no better time to share our story than now. For mothers and fathers facing a similar situation, you can do it! If our son could make it despite the non-sophisticated medical care, if we could manage our emotions and our concerns without counselor or specialist, you are more than able to carry on. Enjoy each moment and stay positive.