Monday, 12 May 2014

Sharing my lessons

It is nearly six months since our dear Annma left us and all I can say is that God has been good to us. I did not think that I would get where I am today but here I am. We see many happy days compared to the sad ones. My dear husband has been and still is a great support. Mark...bless him still has questions. One consistent question is...'How did God take our baby? Did He come down from the sky?' I'm still searching for an appropriate answer to that question. I have also noticed that whenever he sees other children who have a younger sibling, he tells them that we also had a baby but God took her. My prayer every opportunity prays that God gives us twins who will stay with us forever. They are both looking forward to another baby who Mark fondly calls...Tendo.
Following my last article, over lunch, I met a young lady who is also walking down this dreaded road for a second time, hers being consecutive losses. Her pain was so fresh that I initially thought we would not be able to eat our food. I admired her strength which she draws from her faith in God. Listening to her story gave me a whole new perspective. We shared so much and I felt encouraged to follow my heart…my dreams. God has a personalised plan for each one of us and we should not try to suppress what we long for just because someone else does not have it. I went back to my office feeling much happier. It was a great pleasure meeting you Dee; you are always in my thoughts. Esther, thank you for making this meeting possible…it left a great mark on my heart.
Being a member of a group of Mums, I was disturbed by the rate at which both mothers and new borne babies died last year. What greatly saddened me was that this was happening to both those who had access to some of the best facilities, or at least i thought they were, in the country and, those who did not. Many of these deaths could have been avoided! After understanding the cause of Annma's death, certain things, or rather, tell-tale signs, which we should have picked up on but didn’t, suddenly made sense. For example, on the day of her birth, Annma was very fair skinned...I remember my brother Geoffrey visiting us in hospital and commenting..."Where do you people get light skinned children from, when you are both dark?" ha ha ha! However, within a few days of getting home, Annma became dark. I expressed concern to my sister Annet about the sudden change in colour. She told me not to think much about it, saying that baby Siima, my younger sister’s daughter experienced the same change in skin colour but later regained her original complexion. Weeks after she left us, we talked about the colour change experience with my brother-in-law, Herbert...he said that was definitely a sign that her body was not getting enough oxygen, a typical indicator of a heart condition. Knowing this at the time would have caused us to immediately seek medical attention. Then there was the constant crying at night which we attributed to colic and the crying whenever I put her on my shoulder to burp.
My experience with my baby re-energises me to advocate for change in our health systems. I have worked with the Ugandan health systems for the past ten years. My journey over the years has been one of wishing that things could be a little bit different. In my dreams, I always think of the changes I'd make if I got into an influential position...ha ha ha…. say if I became the Minister of Health or Finance. Since I cannot live in my dreams and to be honest I do not even think I want to hold any of those portfolios ...I will use what I have to contribute to even the slightest amount of change.
Like many Organisations, the Ministry of Health (MoH) has got very good policies and guidelines. If you read them without going to see the reality on the ground you'd wonder why people would even complain about our Health systems. Shortly after our Annma left us, I asked my colleagues who are Medical Doctors whether there are protocols that should be followed on the arrival of a new baby. They said protocols exist but are not implemented as per the MoH guidance. I was made to understand that there are a number of medical examinations which should be carried out and that in an ideal situation, a Paediatrician should receive the baby. I wished I had known that!! Wondering why? I would have demanded those examinations for my baby. It’s definitely too late for me...but not for the expectant mums out there. In an ideal health system, the tests offered are described in the article at this link While some of them are not available in our setting; most of them are.
Knowing what you are entitled to is always the first step towards getting it. Take the initiative to find out what examinations your baby should get and discuss with your Gynaecologist the possibility of getting them at your selected health facility. Once they know that you are aware of your 'rights', they will ensure that you get them. If the facility at which you deliver does not provide medical examinations for your new borne, seek them from another facility. I believe that we have gotten to that place where we need to be proactive as patients; there is no room for passivity!
Once equipped with the information, besides using it for your benefit, you should share it with as many expectant mums as possible. During those antenatal visits, the queues are usually long...seize the opportunity and talk to as many mums as possible. Don't stop with those at the clinics, talk to all expectant mums you meet every single day. If we encourage everyone to pass on the message before we know it, there will be a great reform in most of our Health facilities driven by demand for better standards of care from patients/clients.
This strategy will however work for Mothers in urban areas but not those in rural areas who do not even have the opportunity to see a Gynaecologist or a trained Health worker from whom they can even demand for the services in question. Even if the trained Health Worker was available, the facilities are not well equipped. To help these mothers who are a large proportion of our population we need to lobby Government.
If you read this and have the listening ear of influential people including parliamentarians, policy makers in the ministries of health and Finance, please take this issue up with them. If you are a donor out there, this issue presents a great opportunity for you to contribute to the reduction of our maternal and new borne mortality rate!
Everyone, you inclusive, can contribute to the change that we want to see for mothers and babies in our Country and our communities!


  1. thx dear susan for sharing your care. we will indeed tok when we get the opportunity and we pray that this will be a chain that will lead to results. be blessed in this, your journey.

    1. Thank you very much Aunt Apo for offering to share. Its my prayer too that this contributes to some change im our health care.

  2. Thanks Susan for openly sharing your journey and we continue to pray for you and your lovely family for strength!

    1. Thank you very much Patience. Your prayers are very much appreciated. Please share the blog with whoever you think can benefit. I met an expectant mum today....I couldn't believe myself. She appreciated and I went away so happy.

  3. Susan surely this is a very sad experience! Your courage to share it is quite commendable and most important your faith in God to help you and your family through these difficult times.

    1. Thank you for your comment Gilbert. Please share the blog with your friends. Let's contribute to some change however small.

  4. Dear Susan,
    Thanks be to God for the great healing work He is doing in your life and the entire family! Thank God for the happy days you are experiencing more and more. As I read your story, I am reminded that Jesus came “….to comfort all who mourn, and provide for those who grieve in Zion; to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise
    instead of a spirit of despair…” Isaiah 61: 2-3. This is exactly what is happening in your life!
    Susan, thank you, again, for allowing God to use your pain to reach out and heal others—as you are already testifying. Do not despise small beginnings; I believe that through your advocacy work, many more babies will be saved than you will ever know or hear about. And many mothers, fathers and families will be spared from the pain you so fully understand.
    Mark and Crystal: let us trust God to do in their lives what He only can do. One day at a time.
    On my part, I pledge to participate in this more than noble advocacy work, within my circle of influence.

  5. Thank you very much Jennifer for your encouraging comment. Thank you for offering to participate in our 'campaign'. Its indeed a small beginning. My prayer is that it will grow and contribute significantly to saving lives of mothers and new borne babies.
    Thank you once again for reading and sharing the blog.

  6. Susan
    Thanks for sharing, this rather very touching message. It really takes the Healing Power of God to have the courage to share your experience with the rest of the world.
    We continue to stand with you in prayer and we are seeing the fruit of our prayers.
    God works in many ways, i now see how He is using your experience to touch many lives out there in their different spheres of influence.

    I'm going to share this blog with many of my friends, schoolmates, Church members e.t.c
    God Bless

  7. Thank you very much Stephen for your comment and for standing with us in prayer. Your prayers are greatly appreciated. Thank you for offering to share the blog with your circles.

  8. Very touching and sad... thanks for sharing. hope someone in policy and implementation has read and been touched and will make a move. Would be good to start an Awareness Campaign and possibly a charity to raise funds for the most underprivileged. I will be happy to be part of it.
    Be strong, God is with you always..

    1. Thank you very much Margaret for your comment. Indeed a social advocacy group/awareness campaign is my desire. I will get in touch once we kick off.
      Be blessed.