Against
all odds
An
initi
14 tales of triumph over birth adversity a tiv
e of
Copyright Sister Lilian Centre 2016
Contents Tribute
5
Genetic counselling What is it and do you need it?
6
From trauma to triumph ElmarĂŠ de Lange's story
8
My heart's content by Chelanay David
10
The biggest gift by Heleen Janse van Rensburg
12
Here I am, like it or not by Nonhle Nhlezie
14
A rollercoaster of surprise by Sonja Crafford
16
Raising Leah by Charmaine Kay
18
A specially wrapped gift by Sharon Rushton
20
Sixth time lucky by Naomi Mitchell
22
Letting nature take its course by Grace Ramadhan
25
Take heart by Karen Maier
26
Albino, but just the same by Merlyn Glass
29
The unexpected when expecting by Stephanie Fourie
30
Facing my fears by Diana Akoth
32
Comfortable in her own skin Ju-Alize Vogel's story
34
4
Tribute gainst all odds A Birth tales
was born to follow on from the immensely popular and beautiful published by the Sister Lilian Centre in 2015. What special collection of tales was just waiting to be told? That became clear on a summer day early in 2016, when Sister Lilian was introduced to Beulah le Roux Botha and her 54 year old daughter, Elmaré de Lange, South Africa's oldest living woman with spina bida. They shared their remarkable tale of despair and glory, pain and pleasure, challenge and faith, and it became crystal clear just how the human spirit can triumph in the face of adversity – against all odds. Mom Beulah, a condent, strong personality, had just the right temperament and devotion to stand by Elmaré every step of the way, and she set the tone for this little book – see page 8.
This collection of true tales also showcases other mothers and families with the same fortitude, though their stories vary greatly. No matter your beliefs or convictions, you're sure to be lled with a sense of how need breeds courage, be humbled by how unending a mother's love is, and inspired by how strong faith and family bonds can be when the odds are stacked against you. Against all odds was made possible by the generosity of the House of Zinplex and Baby City. Their unstinting support is humbling and typies the same spirit pulsing through all the tales in this booklet, and we salute them for that! 3,000 copies will travel around South Africa and other countries, no doubt touching the lives of many as they turn it's beautiful pages. In addition, Against all odds will be freely available to a worldwide audience to download from sisterlilian.co.za. To Merlyn Glass, Genetic Nurse Counsellor in the Clinical and Counselling Unit of the Division of Human Genetics at the University of the Witwatersrand, our warm appreciation for sharing some helpful insights about genetic conditions, testing and counselling on page 6. Most of all, to each mother who contributed her story, thank you. Your willingness to share your experience is what has made Against all odds emotionally touching, and oh so inspiring.
An Afrikaans book about Elmaré de Lange’s life story 'Ek weet ek kan' was compiled by Anita de Kock, and will be helpful to anyone facing spina bifida. Elmaré is also happy to advise anyone who has a urostomy bag – a service she is often called on to offer to groups of patients. Contact her on 072 202 0047.
5
Genetic counselling by well-trained professionals can help families and individuals so they don't have to face an overwhelming ood of genetic facts and information on their own, says Genetic Nurse Counsellor, Merlyn Glass
Genetic counselling What is it and do you need it?
S
uch counselling can be of enormous benet to families and individuals who are either at risk of having a genetic condition, or at risk for having a baby with a genetic condition, or they or their baby have already been diagnosed with such a condition. Take for instance Grace, who is 39 years old; she has been struggling to fall pregnant for the last 10 years, and is now 15 weeks pregnant. She has been told that she is too 'old' and there is a chance that her baby will have a problem; or Suzie and her partner, Sam, who are worried about having a baby with cystic brosis because Suzie's brother is affected. Mary and James have two boys who are developmentally delayed and 6
they feel that the boys look unusual; they would like to plan another pregnancy, but need advice. Nthando has a newborn baby; she has just been told that her baby may have Down syndrome, and she is feeling totally overwhelmed. Genetic counsellors and clinical geneticists can assist people like these with accurate information and appropriate referrals. There is usually a dire need for more information – not only about the medical aspects of the condition, but also the inheritance pattern and the risks of having affected children. They may even want to nd out what testing is available, or need psychosocial counselling.
Who needs genetic counselling? Genetic Counsellors and Clinical Geneticists can help: £ Families with inherited dominant conditions where there is a 50% chance of having an affected child £ Families with inherited recessive conditions where there is a 25% chance of having an affected child (like Suzie and Sam) £ Individuals with a family history of an X-linked condition, where a mother may be a carrier and has a 50% chance of having an affected son £ Children (like Mary and James's sons) who have unusual (dysmorphic) features with or without developmental delay, where parents would like to know whether or not the child has a genetic condition, and if yes, what the chances would be of having another child with the same condition £ Women of advanced maternal age (older than 35 years), like Grace, who are at risk of bearing children with chromosomal abnormalities £ Pregnant women who've had a previous baby with a congenital condition (that is, a condition present from birth) £ Couples who have lost a baby due to a genetic condition, or experienced multiple miscarriages
this route, rather wishing to prevent the fertilised egg cell from developing, than facing the difcult decision of whether to terminate the pregnancy at a later stage.
How is genetic counselling helpful? Being given a diagnosis helps to understand the long-term effects for the child or adult, and in some cases, to make sure that parents and teachers have realistic expectations. Knowing what you face also means that your counsellors can provide guidance regarding how to treat and manage the condition. Besides offering information and testing, genetic counsellors and clinical geneticists provide psychosocial support, because understandably, many of the conditions can cause great anxiety and worry. If necessary, parents and families are referred to relevant support groups and psychologists. People like Grace, Suzie, Mary and Nthando, and maybe you, need not feel alone as you face the huge adjustments news of a genetic condition requires. Take heart, there are many who have used the diagnostic and support services available, and have been so much more able to triumph over adversity, despite the many challenges they face.
Types of tests
FINDING A GENETIC COUNSELLING SERVICE
If a clinical genetic diagnosis is suspected, genetic counsellors and clinical geneticists do offer diagnostic testing, although patients are referred to other appropriate healthcare providers if they need specialised, invasive prenatal testing, like chorionic villus sampling or amniocentesis. Genetic counsellors and clinical geneticists also use newer testing techniques, such as the non-invasive prenatal testing (NIPT) in which blood from a pregnant woman, from nine weeks, can be used to detect and diagnose conditions like Down syndrome. For couples with a high risk of having a baby with a genetic condition, genetic counsellors and clinical geneticists provide the option of pre-implantation genetic diagnosis (PGD). This is a way to test an embryo for genetic disease before implantation; that is, before the woman even becomes pregnant. Some couples prefer
Gauteng Genetic Clinics are held at the three academic hospitals in Johannesburg: Chris Hani Baragwanath, Charlotte Maxeke Johannesburg Academic Hospital, and Rahima Moosa Mother and Child Hospital. There is also a Genetic Clinic for private patients at the Wits Donald Gordon Medical Centre. T: 011 489 9223 or 078 080 8841 E: Merlyn.glass@nhls.ac.za or Human.genetics@nhls.ac.za KwaZulu-Natal For more information, contact the Genetic Co-ordinator in KZN, Sister Namitha Chabilal: T: 031 401 8717 or 084 901 8717 Western Cape For more information, call: Ÿ The Division of Human Genetics at the University of Cape Town: 021 406 6373/6995 Ÿ The Division of Molecular Biology and Human Genetics at the University of Stellenbosch: 021 406 6373/6995
7
Mom Beulah le Roux and daughter Elmaré de Lange shared their incredible tale of facing spina bida with Sister Lilian
From trauma
to triumph
At the end of the day, what children with disabilities need most, is lots and lots of love, says Elmaré.
Compiled by Sister Lilian
E
8
It’s just amazing to her how God may have taken one life, but given her back another, shares Chelanay David
My heart's content
“
I
am 24 years old and have been married to a wonderful man, Sheldon David, for almost ve years. We have two lovely boys named Ciaan and Shiloh, and the story I want to share is about my little guy Shiloh. We planned this pregnancy and were overjoyed when the doctor conrmed it.
A rocky ride from early on My pregnancy started off well even though I had the worst possible morning sickness, more like all day nausea! 10
“We named him Shiloh Walter for my dad, and he reminds us constantly of my dad, as he has so many of his ways.” Then, one late afternoon I was preparing supper for my family when I suddenly had an urgent need to go to the loo. I was spotting very dark blood and immediately panicked. My hubby quickly loaded me into the car, but on our way to the hospital it felt as though my waters had broken. I was just 15 weeks pregnant. On arrival at the hospital we were turned away as they said that they didn't have the equipment to assist us. Off we rushed to the next hospital and by then all I could feel was blood trickling down my legs. I cried for help and prayed to God not to take my baby away. A doctor eventually checked me and said everything seemed ne, but that a sonar was needed. I was kept in the hospital overnight and it seemed that everything was ne, as I could even feel my baby moving.
The sad cycle of life A few weeks later my dad fell really ill and our family was told that it was the end for him. I prayed that my baby would be a little girl and that my dad would meet her before he passed away. Finally, at six months pregnant, we found out the gender of the baby I was carrying, and it was another boy. I rushed home to tell my dad that I was going to name this baby boy after him. He smiled and was so pleased that his new grandson would carry his name. Sadly, just one month later my dad was called home to meet his Maker. This was such a sad time for me, and I was emotionally really stressed. I just couldn't
come to terms with losing my dad, and especially with him not having the chance to meet our second son, and his namesake. At 34 weeks I experienced severe cramps of my womb, and once again had to hurry off to the hospital where the doctors said it was too early for my baby to be born. My blood pressure was low and I had to spend a few days in hospital. And then, exactly 40 days after my dad's passing and just over 38 weeks pregnant, I was overcome by a horrible feeling and intense pain. Hubby Sheldon once again had to rush me to hospital where I was told that I wasn't in labour, but that our baby's head was too low.
Happiness comes home Once again I had to be admitted to the hospital and my doctor decided to induce labour the next morning. That evening the labour pains started and Sheldon joined me in the labour room and watched as his son was born. The umbilical cord was wrapped around his neck, yet our little miracle baby was born at a bonny 3.19kg. He was healthy and beautiful and I could immediately see my dad in him. It felt like God had given my dad back to me, in the form of my own son. We named him Shiloh Walter for my dad; he is already a bit over two years old and the most adorable kid ever. He reminds us constantly of my dad, as he has so many of his ways. 11
There was something wrong with her daughter's brain, but Heleen Janse van Rensburg kept her faith, and found strength, hope and ultimately, joy
The biggest gift
“
A
lmost a year had passed before the stick showed a second line! I raced down the passage of our little house at 5am, shouting my husband's name. We were ecstatic! We were expecting! Taliah Rebekkah would be her name. A little girl! Our dream had come true! We went home from our second sonar knowing the gender and owning a DVD with footage of our perfect child.
A turn for the worse Our next appointment for a scan was at 20 weeks. We were looking so forward to it. 12
As the doctor scanned over her brain, she paused. Even to my untrained eye, there was something amiss. Should there be two big black ovals in her little brain? No. We were to come back in eight weeks, eight long weeks. The water could be absorbed, resulting in nothing, or it could grow worse. At ď€ rst it was a battle to trust the Lord. It took a few weeks and many tears, but I came to accept that whatever the Lord chose is good. Week 28 revealed less-than-desirable results. The ventricles were enlarged to a destructive degree. We were no longer looking at a situation
We wanted to protect, nurture and love her for as long as we were entrusted with her life. where a shunt would solve everything. The pressure would damage the surrounding tissue. Her little brain was in serious danger. Three specialists and an MRI scan later, we knew that she had a sick and damaged brain. There were no brain folds, a syndrome called lissencephaly; poor connection between the two spheres; a few cysts; meagre, damaged white matter and enlarged ventricles. The outcome was bleak. Most of the doctors suggested abortion but that would have been against our beliefs. They were expecting her to be disabled to the extent of little to no mental or physical development. She would probably die very young, most likely by choking on saliva or her milk because of poor muscle tone or severe epilepsy. Week 32, and another MRI conrmed the diagnosis. Despite all the medical difculties, I secretly had two desires. One was a natural birth and the other was to breastfeed. Both seemed unlikely. And, at 2:20 am on 1 April 2016, a screaming baby was lifted from the water and handed to me.
My heart melted as she stopped crying in response to my voice. She knew me and I loved her with a erce love. Everything had gone so smoothly with her birth, but now the ICU was waiting for us. She had NO normal reexes. She couldn't suck. She couldn't nurse. I was distraught. The midwives tried their best to help her, but her rst feeds came through a nasal tube, while she lay on a hard bed under blue lights.
The turning point On Day 2 we repeated the MRI and although the now-familiar black ventricles were as clear as ever and she still had very poor white matter, there was something different: she no longer had the smooth brain syndrome – the lissencephaly was gone and brain folds had developed! The outcome had changed. We were looking at motorical damage and a child who would have great difculty physically, but there was a chance of intellectual abilities and relationships. I spent the next few days in a cloud of joy. She learnt to suck on my nger, a learnt physical behaviour. We progressed to feeding her with a syringe, and took her home still syringe feeding. There were so many difculties: regular feeds, choking, winds, excess milk production, repeated mastitis, a zombie-like child, criticism from people with other convictions. God's faithfulness and small victories kept us encouraged: we managed to get her to drink from a bottle. She started therapy as soon as she was six weeks old. The Baby Therapy Centre in Pretoria proved to be such a help. Armed by the speech therapist with exercises that triggered her rooting reex, we tried breastfeeding again at three months. With the bottle, we had pried her mouth open and massaged her jaw to stimulate her sucking, but now she was trying by herself. At three and a half months, I said goodbye to my trusty breast pump and said hello to exclusive breastfeeding. What a joy! Taliah has overcome so many obstacles. She will by no means live a 'normal' life, but will live. She has started to lift her head, and to lift her hands to her face. She makes eye contact and smiles. She is the biggest gift. We have learnt so much already and look forward to a humbling road paved by a loving Father. 13
There's no knowing what adversity a pregnant woman might face, as Nonhle Nhlezie's story shows
Here I am,
like it or not! “
already had one daughter when I discovered that I was pregnant with my second baby. At the time I was staying with my boyfriend and he was the very rst person I told. He was not pleased, and immediately said that I need to abort 'that baby', that we couldn't afford to have another one at this stage. What could I say? I tried every abortion pill there was; I even went to traditional healers but they all failed to end my pregnancy. I kept thinking about how my mom would feel when she heard that I'm pregnant again. It may seem selsh of me to think about that instead of the little one I was carrying, but the reaction I had from my boyfriend and knowing what a burden it would be to my mom weighed heavily on my mind.
I
14
Taking denial to the ninth month And so I simply denied to everyone, including myself, that there was a baby on the way. When my tummy started showing my mom would ask me if I was pregnant but my standard answer was “no mom, I'm not”. I didn't go for any checks at the clinic, and in my mind, I wasn't pregnant; I acted normally throughout, even wearing slim vests. Then came the day that my boyfriend didn't want to see me anymore, and he asked me to move out after a few months of us ghting and him not supporting me; my feelings were all over the place. What could I do, it was such a hectic time as well! I decided I would move out and go back home the very next day, but that night I felt labour pains.
And so the day I planned to leave turned out to be the day I gave birth. That morning my boyfriend left to go and help his mom, and as I was about to take a bath my waters broke and I felt like pushing. Everything happened so fast; I pushed and gave birth to a baby girl. She cried lustily, and I could see she was doing well as I checked her. Just then, my boyfriend came back. He opened the door, saw that I had just given birth and panicked, but I calmly told him that he must cut the umbilical cord. He was crying but clamped the cord with
A burden shared is a burden halved, and that's how writing this story has helped me. pegs and cut it with a razor. Then he took us to the nearest clinic, where they checked us and both Baby and I were ne. I named her Elihle Shabangu which means something beautiful; her other name is Nozibusiso, meaning blessings... I was blessed with a beautiful daughter and she's now two years old, but that was not enough to keep my boyfriend; nor does he want any contact with his little girl.
Sharing helps healing My mom was very shocked when she heard the news, but she didn't criticise or judge, and she took care of my baby and I. My little girl is very healthy and smart, but I have been very badly affected by this whole experience – no-one knows just how badly. Sometimes I have to withdraw and sit alone in the bathroom and cry about it all, and how they rejected my little girl. I'm also angry at myself, for allowing them to hurt me like that. I've been single ever since because it's so hard for me to trust anyone again. I'm grateful that I can at last tell my story and share my pain with my family - I know it will help me to heal; I've been wanting to, but didn't know where to start. 15
Sonja Crafford had tried to have a baby for 12 years, with two gynaecologists saying that she could not have children
A rollercoaster
of surprise, guilt, mixed care and blessings
“
I
'm 37 years old now and despite predictions that I wouldn't fall pregnant, I had my rst baby, a girl, at 35. Then, at 36 years we found out that I was already 14 weeks pregnant with my second baby… needless to say, I was very shocked, especially being jobless at that time as well. I felt really overwhelmed. How would we support this baby?
From despair to elation to concern I immediately made an appointment with my gynae but the rst available one was in another three weeks. About two weeks before this date I started bleeding heavily while running after my 15 month old toddler. Hubby Pierre Mulder rushed me to the emergency service where I had a four hour wait to be helped. 16
“I didn't feel the loss of my unborn baby's twin, because all I saw was life.”
During this time I experienced one guilt trip after another about having felt depressed, and really not wanting to be pregnant again – although I must add, Pierre was elated from the start. It went through my mind that this was obviously a miscarriage and that it was my fault for being negative about my pregnancy. The gynae that examined me sounded so clinical, cold and hard, math-ish, I thought.
And then we saw it... a heartbeat! Our baby's heartbeat looked like a small little jelly tot bouncing around. The gynae said that she was sorry to have to tell me that I had lost this baby's twin, but I didn't feel that loss because all I saw was life, and for the rst time I was superecstatic! I couldn't stop the tears from owing. Next moment the doctor said she couldn't see all of our baby's anatomy properly, and for the next two weeks we worried about having a baby who was deformed. Would the stress never stop? At my next detailed scan all was well, and again I could breathe a sigh of relief, though it seemed as if I had gestational diabetes and placenta praevia… more stress! Nonetheless, everything went okay after that until my waters broke at 30 weeks. Yet again we rushed to the emergency room and I was booked in for
possible C-section if the treatment couldn't stop me from going into labour. And then I started bleeding again... Amidst all this a nurse came to tell me that I need to put down an amount of R120,000.00 for neonatal intensive care, since our baby would be two months premature; apparently the cost could add up to between R350,000.00 and R500,000.00, depending on our baby's progress. We simply didn't have these funds and so off we had to go to the state academic hospital in Pretoria, and boy, was I pleasantly surprised! I had to stay in hospital until my baby was born because of the diabetes and needing antibiotics and other treatments.
Lots of lessons One week later our baby boy was born via emergency C-section, due to fetal distress. His heart rate dropped and he almost died, but the doctors managed to save him. He weighed 2,2kg and was the most fragile little thing I had ever seen. My daughter had weighed 3,8kg at birth and so I'd never seen such a small baby as my son. He surprised us all though. After only one day on oxygen and one week in the neonatal ICU, we could go home. Today he is six months old and smiles all the time. We are so proud to be the parents of our children, and feel tremendously blessed! 17
Charmaine Kay shares her journey of raising Leah, her daughter with achondroplasia dwarsm
“
I
Raising Leah
will never forget that day in my doctor's ofce, looking at the image of my baby on the sonar screen. I felt so excited. Then I heard my doctor say, 'Something is wrong. We need to get you to a specialist. Your baby is not developing normally.' My whole world came crashing down. I was gripped with fear. I felt helpless. I could not believe that this was happening to me. As I walked out of the examination room, I felt as if I was under water. Every sound was mufed and each step I took felt heavy. I remember thinking that this has to be a mistake – after all, I hadn't had any problems with my previous pregnancies. By the time I got home I was in tears. I was angry at God. Was God not supposed to protect me and my unborn baby? How could He do this to me?
18
I felt punished I was spiritually broken and I began to distance myself from my unborn baby. I was afraid of what the future held. I didn't want to deal with a child who could be sick. The day arrived for me to visit the fetal abnormality specialist. I remember walking down the hallway and feeling totally disconnected from what was about to happen. The room had monitors from wall to wall and the atmosphere was cold. I was just another patient about to nd out what was 'wrong' with her baby. During the scan I looked at the monitor and I remember thinking that I wanted them to hurry so I could leave. I didn't want to see too much, fearing that I would get attached to this baby. The doctor told me it was a girl but even this didn't excite me. I was numb inside.
Leah is the best unexpected thing that could ever have happened to our family.
After the scan, the doctor called me into her ofce and told me that things were not looking good – it could be a number of issues, from Down syndrome to severe skeletal dysplasia. I was told there were no guarantees regarding how or whether this child would survive, and that I should consider the 'quality of life' my child would have and how it might affect my family. The specialist's nal words were, 'You should speak to your doctor about your options.' I arrived home early that afternoon. No one was home so I just sat alone in silence. I was consumed with anger. I walked towards the bookshelf, pulled out a book of baby names and threw it across the room. I then took my Bible and threw it on the oor. I was done with everything.
A message I couldn't ignore Later that day, I had to clean the mess I'd made from my book-tossing temper tantrum. As I reached for the open Bible, there it was: 'For nothing is impossible with God.' (Luke 1: 37) This verse stood out so clearly. I must have read it a hundred times to get it to sink in. God spoke to me in that moment, saying, 'I have never left you. Please trust me.' I put my hands on my tummy and said, 'Lord if this is you speaking to me, I need you more than ever. You said nothing is impossible; the doctors are telling me things are impossible, but I'm going to trust you.' At my following doctor's visit I was told that I could have a termination, as they could not tell how bad the complications would affect her after birth. I will never forget the look of shock on my doctor's face when I said to him, 'I will see you in the delivery room; there will be no termination.'
Doctor, this fetus has a name. We call her Leah and only God has the final say in her life. On 16 October 2006, Leah Kay made her grand entrance into the world. After the birth, Leah was placed on my chest. I overheard one of the doctors saying that our priest should be called, just in case. I put my nger in Leah's little hand and prayed. She gripped my nger so tightly; the presence of God lled that room. With a burst of condence I told the nurse that a priest was absolutely not welcome in my room. The next morning Leah was taken for tests. I kept praying. We were told that Leah has achondroplasia dwarsm; but we were the parents of an otherwise healthy little person.
Leah's lessons Leah is 10 years old now, and she is the heartbeat of our family. She has taught us so much about life, faith and love. I often wonder how so much joy and love can t into such a tiny body; nothing breaks her spirit. She attends mainstream school and is going from strength to strength. We have a blog and Facebook page called 'Raising Leah', where we share her achievements and encourage other families to focus on what's positive about their children. Sometimes you think you have it all gured out; then God turns your whole life upside down, and you know you need to learn new lessons. 19
There is more to life than the rush of living, and sometimes the scenic route is the one best travelled, Sharon Rushton reminds us
A specially “
I
20
wrapped gift
Finally, after ve babies, Naomi Mitchell fullled her dream of a water birth with number six
From VBAC “
M
to water birth
y sixth pregnancy went well, apart from rather horrible morning sickness lasting 24 weeks, the longest I'd ever had. I also struggled with sciatic nerve pain, due to an old car accident which left me with one leg shorter than the other. I saw a chiropractor at 35 and 36 weeks and the difference that made was remarkable! My very rst birth had been an emergency C-section, followed by four VBACs (vaginal birth after C-section). However, more than anything I wanted a water birth.
The long and winding road I expected labour to start in my 39th week, as with the previous four, so when my due date 22
came and went, I wasn't very impressed! I found going over my date depressing and the frequent messages of well-meaning people often made it worse. From 39 weeks and 3 days, I experienced frequent, intense but irregular contractions at night, which zzled out in the morning. This was very tiring as it was impossible to sleep through them! The rst night this happened I thought it was real labour and I called Mynie, my midwife, who had to come all the way from Craddock to Port Elizabeth. A day later it was clear that this was not labour, though Mynie set up the birth pool at the hospital before going home. Finally, a whole week later, at 40 weeks and 3 days, I woke to a slight bloody show. Yay!
I was so excited and called Mynie to let her know. She had to travel for three hours, so letting her know well in advance was important. Early labour in my previous pregnancies was always long and slow, and I expected this one to be similar. Mynie arrived at 11am, checked me, and conrmed that I was in early labour, though things were going predictably slow. That whole day I had irregular contractions, but when they did come, they were intense. It was strange for me to feel them in front and low, as with our other children I felt them in my back. I fetched our ve children from school in the middle of the day – what an uncomfortable drive! I was relieved to get home and knew I wouldn't be driving again that day. Mynie came to check on me again, and around 2pm I asked hubby Nicholas to come home. He was there by 4.30pm to take the children to my mother (Omie) and sisters for the night, to their great excitement. Meanwhile I took a long warm bath and when he returned we relaxed and read. As time passed, I became frustrated that nothing was happening, and worried about how long it would take, the time Mynie had to wait, and my mom having to have the children.
The art of relaxing Mynie told me to relax, reminding me that labour wouldn't happen if I didn't. She checked on me again at 7pm and I was 3cm dilated - denite if slow progress - and we agreed that she should do a stretch and sweep of my cervix to help progress. She then suggested we try and sleep, as Nick and I were both very tired. He fell asleep straight away, but not me, as the contractions started again! I decided to start timing them and they were denitely becoming regular and strong. A short while later I put on the TENS machine to help soothe the pain, and I could doze a bit. By 10pm the contractions were far too strong to sleep anymore, and I knew it was time to head over to the hospital. I woke Nicholas and he let Mynie know that we were on our way. The drive was unpleasant - the contractions were frequent and painful, and the visibility was terrible as there were no street lights. Eventually we arrived, Mynie was waiting, and my birth pool was lling up! Mynie found far too many ketones in my urine sample because I hadn't eaten for most of the day, and she prepared a drip so my body could cope with labour. 23
There's nothing at all I would change about the experience.
Midwife Mynie knew exactly where to press to relieve the pains which were all in my back again.
I again had that familiar, intense feeling of relief and joy that the birth was over as I held our little Gianna-Marie close in the warm water. She barely cried and was so calm and relaxed, and became all pink so rapidly, despite the cord having been around her neck twice.
A short while later I was 7cm and it was almost time; wow, it was going fast! A few contractions later Mynie said it was time to get into the water as Baby would soon be there, and she put up the drip. I was a bit afraid to take off that helpful TENS machine, but as I entered the water the feeling was amazing; warm and gentle and so soothing. Nicholas had headed off to administration for the paper work and though we told him not to be long, the computer systems were down, so he had to ll out everything by hand. Mynie phoned to tell him to come as baby was coming! I had only been in the pool a short while when the urge to push started. I felt a sudden pop as my waters broke, a very strange sensation for me as with my previous normal births the membranes were broken articially. Mynie now dimmed the lights and only used a torch, so that our baby wouldn't have to be born in bright light. Baby arrived very quickly after that and I turned to meet my newborn, putting Baby on my chest. Nicholas asked what we have - I had a look, and it was a baby girl. We were both so excited, as our last two were boys.
I had arrived at hospital just one hour and ve minutes before her birth at 11.34pm on 4 September 2015, at 40 weeks and 4 days. Ative labour was only three hours and pushing took just three minutes. I stayed in the water for a while until the cord stopped pulsating, and Gianna-Marie had had her rst breastfeed. Mynie then let Nicholas cut the cord and helped me out of the pool as she needed to attend to the birth of the placenta. Nicholas held GiannaMarie skin to skin during this time. Gianna-Marie weighed 3.48kg at birth and was 53cm tall. Soon I put on her rst pink cloth nappy and then kept her skin to skin for the rest of the night, breastfeeding her almost the entire time – she was calm and happy. I was able to go home the next day and our other children were delighted with their baby sister. I am thankful to God for keeping me and Gianna-Marie safe during birth, and to my wonderful husband who also makes a wonderful doula! Mostly, I am thankful to Mynie, my amazing midwife, and such a calm and reassuring person to have with me.
24
Definitely different
Doctors told Grace Ramadhan that her baby wouldn't make it but Grace knew that God had other plans
Letting nature
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take its course
was 20 weeks pregnant and having my breakfast on a chilly Friday morning when I felt the urge to go for a short call. I went to the toilet and passed a lot of water. Knowing something was wrong, I called my gynaecologist, who advised me to go to the hospital. The hospital did a scan and told me that I had lost all my water – the amniotic uid – and that they expected that I would go into labour. They asked me if they could induce me and I refused. I wanted to let nature take its course. The hospital staff called the chief doctor of the NICU to talk to me. He told me the earliest they can do anything to save premature babies is 23 weeks. He advised me to let them terminate my pregnancy and said that I could try again in three months, but I refused. I was put on a drip and bedrest, which meant only leaving the bed to go to the toilet – nothing else.
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I knew that every day she stayed in my womb was good for her.
Any movement was a risk for losing my baby. I took it one day at a time. I got to 23 weeks and they gave me medicine, which was supposed to boost my baby's lung development so she would have a chance if she came out. I was also told that the longest I could stay in this condition was until week 28 – longer than that, and she could pick up problems due to lack of movement.
A precious gift On 10 February 2015, at 26 weeks of pregnancy, I went into intense labour. They tried to stop it but couldn't and at 11.45pm, I gave birth to my baby girl, weighing only 830g. I named her Precious. I was not allowed to see her because they were doing everything to save her life and after 24 hours, I was allowed to look at her through the incubator glass for only 10 minutes. The NICU journey started. I pumped breast milk, which was reserved in the freezer so they could feed her it to her. After 115 days in the NICU, it was nally time to bring her home. She weighed 2,2kg and was 45cms long. Today, at the age of 14 months, she has just started crawling. God proved the doctors wrong. 25
The birth of a baby with Down syndrome may take some adjustment, but at the heart of the matter is great, life-changing love, says Karen Maier
Take heart
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Vusi and Refilwe's son Tshepo has albinism, but he is just like any other baby
Abinism is not caused by anything that a couple did.
Albino, but just the same
aby Tshepo is ve months old. He cries when he has a wet nappy and when he is hungry, just like other babies. Tshepo only looks a bit different because he has albinism. There was no-one in either Vusi's or Relwe's family who had the condition, so it was quite a shock for the young couple when Tshepo was born. Thankfully, the couple's parents and siblings have been very supportive.
Myths and falsehoods Although Vusi and Relwe have accepted Tshepo's condition completely, there are many myths and legends that surround the conception and birth of a baby with albinism. These falsehoods often frighten young parents because the family beliefs are sometimes very strong, and it can be very difcult to dismiss those age-old beliefs. Some of these myths include that a baby is born with albinism because: ¤ the mother had sexual intercourse with a 'white' person ¤ she had sexual intercourse during menstruation ¤ she laughed at a person with albinism ¤ she threw stones at an affected person ¤ she sat next to someone with albinism in the taxi or bus Another myth is that a person with albinism is not made of esh and blood like other people,
and is a 'spirit' person, who will not die but will just disappear. All of these myths are untrue.
Faulty genes With careful counselling and explanation, Vusi and Relwe thankfully understand that Tshepo's condition is caused by a decreased amount of pigment (melanin) in the skin, hair and eyes, because the gene that makes melanin is faulty. There are different types of albinism, but the most common type in South Africa is called oculocutaneous albinism type 2 (OCA2). One in 30 southern African black people carry a faulty gene but show no features of the condition, because their other gene is functioning normally and can produce melanin. However, if a baby receives a faulty copy from each parent, her or his body is unable to make any melanin. The baby will then be affected with the condition, just like Tshepo. For each future pregnancy, the couple would have a 25% chance of having another albino child. It is important that people with albinism take care of their skin well. Because the skin is so fair, they are at a high risk of burning in the sun and developing skin cancer in later years. People with albinism also usually have visual difculties, because of the decreased pigment in the retina and the iris of the eye, as well as the optic (eye) nerves passing through to the brain in a different way. In all other ways, a baby with albinism is no different from any other baby. 29
Compiled by Merlyn Glass
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At 29 weeks pregnant, Stefanie Fourie thought the pain in her back was Braxton Hicks contractions, but it kept getting worse...
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The unexpected when expecting
was 29 weeks and a few days pregnant. It all started at work: I went into labour on a Friday, but thinking that it was Braxton Hicks contractions, I ignored the feeling of pain in my back. Over the weekend, we were with my parents and I could not stand longer than a minute. On our way home, the pain got worse and every small bump on the road made it feel
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like someone was stabbing me. When we got home, my partner, Nathaneal, went to play an online game, while I went to rest in the bedroom. The contractions got worse.
No longer fun and games I started googling Braxton Hicks and it said to drink three glasses of water and to take a warm
They did not believe I was in labour. bath. I'd done both but nothing seemed to ease the pain, so I googled labour pains and it said that every time I felt pain, it was a contraction, and that I needed to time them. My contractions were three to four minutes apart. I went downstairs to Nathaneal to let him know and he said we should go to hospital. I said, 'No, nish your game. I can still handle this.' Five minutes later, he was nished and off we went to Olivedale hospital, where we went straight to the maternity ward. There were student nurses on training and they didn’t believe I was in labour, so they put me on a machine to check my contractions, and I was already 4cm dilated. They phoned my doctor and he said I needed to get steroid shots for the baby's lungs and also be put on a drip to stop the contractions. All went well after that – everything was perfect. On Tuesday, the doctor came to see me and organised a scan to see what was happening and why I went into preterm labour. The scan showed nothing. On Tuesday night, the doctor removed the drip to see what would happen. That same night, my contractions were back again. I phoned Nathaneal and he rushed to the hospital. I cannot remember what time this was but he said it was late at night. When he arrived at the hospital, the nurses sent him home and said they would phone him when he needed to come.
Nathaneal was still on his way home when they phoned him to come back. He went straight to the maternity nurses and they told him they thought the baby would come soon (this was two o'clock in the morning). Nathaneal came to check up on me and as soon as he walked in the room, my water broke. Seeing this, he called the nurses. They came rushing in, checked me and saw I had a prolapsed cord and the baby's head was showing. They phoned the doctor and everyone rushed in for an emergency C-section. I can only remember the drip being put in my arm – it burnt – and then I was out cold.
Thankful Nathaneal said they had me in a position with my buttocks raised, trying to keep the cord and baby in by hand while they prepared to operate. He told me nothing was sterilised, so my daughter and I got big injections of antibiotics. Nathaneal said our daughter came out kicking. Rebecca spent ve weeks in NICU and her birth weight was 1.67kg. She was 40cm in length at 30 weeks. To this day, I am so thankful that she is a healthy 2.5-year-old. She does get sick a lot but that is what one can expect with premature babies. 31
She found out that she was pregnant at a very confusing time in her life, when things just weren't going right for her, condes Kenyan mum Diana Akoth
Facingmy fears A baby is indeed a blessing and three months down the line I'm loving the joys of motherhood.
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t the time, I had lost my job, and was still living with my mum. I moved out when I was two months, and had to do part time jobs to pay rent and for basic needs. I had complications in the rst three months where I bled for two days and was put on bed rest. After a while I started working again – I do video coverage of weddings
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and corporate events, which involves a lot of standing and carrying heavy equipment. I worked until I was six months, all the while under a lot of stress, having faced rejection from the father of my unborn child and still unsure how my family would react to the pregnancy. I nally gathered my courage and told them about it over
the Christmas period of 2015. The support I received from all of them was immense and unbelievable. Now, I'm mum to my lovely boy Kendrick, who was born at 30 weeks.
Six weeks of stress Come January I still covered some events, and by the end of each day I felt so tired. Early in February of 2016, on a Sunday, I suddenly felt I was wet, and on checking found a lot of water coming out. That night I went to a clinic and they told me my waters had broken, at just 27 weeks! They gave me some medicines which they said would postpone labour from starting. By the next morning my waters were still leaking and I went to Mbagathi District Hospital, since that's where I had planned to give birth. A scan was done and the results made the doctor immediately write the admission form and put me on total bed rest.
I had never been a patient in a hospital before; all I could do was cry and the more I cried, the more the water came out. Next thing I was being given injections (very painful ones, I might add!) to enable my baby's lungs to develop faster. I was there for three weeks as the doctors bought time for my baby to have a little more womb time. On the 17th of February a scan revealed that I had absolutely no amniotic uid left and I had an emergency
C-section. Despite this, it was so good to nally be able to see my baby boy. He was taken to the nursery and by the next day the doctor said that my baby couldn't breathe well enough and we had to be transferred to the national hospital Kenyatta.
From stressful to really scary I cried all the way in the ambulance. Life in Kenyatta was hard - for a whole month we'd feed our babies every two hours. Just walking with my two day C-section wound was hard enough, but with time that healed. Having my baby in the incubator was very stressful, especially when he couldn't breathe on his own and had to be put on oxygen all the time. Some days I'd fear going upstairs to the nursery, never knowing what news I'd get. There was a time when three babies would share an incubator, mine in the middle; the one on the left died, then the one on the right died too, and my baby was left alone in the incubator. Soon another baby was put in, but she died too. That was the scariest part. Time passed and little by little my baby gained weight, until he could move from the incubator to the baby cot, because he could now breathe on his own. Breastfeeding moved from being fed via tube to directly at the breast. And then, one day, the doctor said we could be discharged. I made lots of friends while there, and we promised to organise a reunion for our babies. My story had a happy ending, but some don't get to carry their babies home, and have to believe it's all in God's plan. I had so many family members and friends holding my hand – and I’ll always be grateful for that! 33
Two-year-old Ju-Alize Vogel could nally bath without pain and play like other toddlers, after a Cape Town doctor diagnosed her with acrodermatitis enteropathica
Comfortable in her own skin People looked at us like we were bad parents. It got so bad that we stopped going out.
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u-Alize, like many little ones, loves to run around in the garden. She also loves to climb up onto chairs and to play with her mommy's hair. But there was a time when she was not even able to wear a T-shirt or a pair of pants. Just two months after her rst birthday, Ju-Alize 's parents noticed a small blister on her lip, but didn't think anything of it. Little did they know that the blister would cause them heartache for the next eight months. “We just thought that it was caused by her dummy, but by the morning, she had a rash on her knee and by the next day, it had spread like
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wild re. It was in her toenails and ngernails, on her calves, her arms, and it even started in the white of her eyes and tear ducts,” says Liza, Ju-Alize's mom.
Desperate for answers The worried couple, who live in Strubenvale, 50km from Johannesburg, spent the next few months visiting doctor after doctor, trying to nd answers. “We saw 14 doctors from Springs, Pretoria and even Rustenburg. We went to two homeopaths, four dermatologists and a number of
paediatricians. No one could help us,” Liza says with tears in her eyes. The Vogel family was give cortisone creams and medication that made no difference. To make matters worse, they were frowned upon by the community. “So many people whispered behind our backs, asking if we had burnt her. I could not understand how people could criticise us, even though they didn't know what had happened.”
Every time the now-active toddler needed a bath, both parents would need to cut her clothing off. The rash on Ju-Alize 's body turned to blisters and eventually began peeling. She lost all her hair, as well as her eyelashes and eyebrows. “The rash never dried out, so her clothes stuck to her all the time. It was so painful to see my baby in so much pain and I felt helpless, because there was nothing that I could do. I couldn’t give up work, because the medical bills were so high, so my mother-in-law would sit with her during the day. My baby could not move and would lie still on lots of soft pillows,” Liza says emotionally.
Zinplex brings relief Eventually, they were given the number of a Cape Town doctor who could possibly help them. “This doctor took one look at a picture of Ju-Alize and said that she was suffering from a zinc deciency. He prescribed Zinplex Junior syrup, which can be bought over the counter and wasn't even expensive,” she says, adding that after two days, her baby's body started healing. “I could not believe the change in her. She stopped crying and started looking much better. Within three weeks, her body was clear of all blisters and rash. Ju-Alize's grandpa contacted Zinplex and fortunately managed to get the syrup supplied to us directly,” says Liza. Four months after being diagnosed with the rare disease, the friendly brown-haired toddler was playful, energetic and healthy. She was now able to wear all the pretty clothes in her cupboard and couldn't wait for her bath at night. 35