Having a premature baby is one of the most emotional roller coaster rides you will go through. Every mommy and daddy dream of that day that your precious little bundle is born, the day where everything is prepared for his/her home coming, the nursery is all prepared and ready, all the baby clothes are washed and packed away. Imagine your life being turned upside down when you are rushed to hospital because of complications and baby is coming early whether you are prepared or not. Most parents have plenty time to prepare the nursery and rest before baby arrives but for most prem parents, their nurseries aren’t even ready and those clothes that may be washed will not be worn for weeks.
Lavonne is the founder and CEO of Preemies for Africa. If her pregnancy did not happen under these circumstances, Preemies for Africa most probably would not have been here today. Just think how powerful and life changing these emotions must have been to cause a mother to devote her life to start a company such as Preemies for Africa.
This is just the first of the life changing stories we will bring to you. Be prepared to be amazed at the will power and fight in such tiny little babies. We bring you the stories of true heroes and heroines. These stories have not been edited by professional writes they are raw unprocessed emotions, written by mothers in love with their children.
This is Lavonne’s story when she had her preemie, Simone.
Since childhood we dream about the day of becoming a mother. While playing with our dolls, we vividly see the future. In our teens we tell ourselves: “One day when I’m a mother, I will not do that”
And then one day, this dream shatters in to small little peaces. I was 18 years old, when I was told that I will never be able to have kids. After 3 failed infertility treatments, and a failed marriage, I decided to give it one more try with my new husband.
When doing infertility treatment, you count each and every day of your menstrual cycle. So we did the injections, tables and IVF, and on day 25 of my cycle I was admitted to hospital with severe vomiting and abdominal pain.
The sonar showed two precious little sacks, with a very big cyst (diameter of 7cm). So we knew it was twins, even before blood tests could confirm the pregnancy.
The cyst put the whole pregnancy at risk. Doctor could not drain it, so the only solution was to leave it, and hope that it will go away. Due to this high risk, the constant vomiting and other factors, I was put onto bed rest.
During our 6 week sonar, we could only see one heart beat, and doctor needed to do an internal sonar to get heartbeat 2. On 8 weeks, both heart beasts were showingn strong and at 12 weeks, only one heart was visible.
Alexander died around week 10 of the pg. Even thou we don’t know for sure, what it would have been, I have named my baby to ensure closure on this subject.
Since the twins were in separate sacks, and Alexander’s was on top of Simone, the risk for loosing her was high, so it was back to bed. At 18w we suspected that Simone had Spina Bifida, which was ruled out by sonar. I was still on bed rest, since I was constantly vomiting.
To my great relieve I was told, it was safe to get up, when I was 28w pregnant. At this point I changed my mind about having a scheduled c-section, since I thought it would be impossible to go the natural route, with my back problem. After speaking to an orthopedic surgeon, he ensured me that I will be able to go natural, so I informed my OBGYN accordingly.
A part of that small girls dream was turning into reality. The night after completing the baby room, which was just as I dreamed, a cramp hit me, pulling me over. I visited my OBGYN the next morning, and was ordered back to bed, since Simone moved into the birth cannel. I begged my husband to take me to purchase a car chair, since that was the only thing outstanding, despite the direct orders of straight back to bed and to stay there until Simone’s birth.
I awoke the morning of 18 September 2001, with the greatest urge to urinate, and as I got to the toilet, I suspected it was not urine, but maybe my water that broke. Very calmly I woke my husband and ask him to get dressed, I paged the OBGYN and when she did not return my page, fast enough to my liking, I phone the 24 hour medical centre. A male dr answered the phone, and my first’s words were “How does it feel when your water breaks” Needless to say he could only tell me what the books said it felt like ….
Eventually I got hold of my OBGYN and was instructed to go to hospital, where it was confirmed that my water broke.
We could hold back the labor, as to allow for some steroid injections to help mature the lungs. Simone was born 19 September 2001, via emergency c-section, @ 18:00 weighing a mere 1.5kg, which was small for her 34 weeks gestational age. I had the natural birth all planned out, and having an emergency c-section was quite a shock. The reason for the c-section was because Simone’s cord lapsed and her heart rate dropped down to 88 beats per minute.
19 September 2001, was a Wednesday, the Sunday Simone came off the ventilator, the Monday she was put back on after having convulsions. A week after birth, a broviac was inserted for there were no more veins for the drips.
We took Simone home on 22 October 2001, 4 days before her due date.
Simone suffered from severe reflux in the first year, and was on medication all the time, without it, she would scream non stop, and pull herself backwards so much, that Danie my husband could not bend her legs. We were lucky that she outgrow the problem.
She was 4 months actual age, when we started with occupational therapy, and 3 month into therapy I added Babygym. Simone was 8 months old, when she could turn over by herself for the first time, and that only due to the intense therepay we did.
Simone’s life started off with a bang, and in true female style, she ended her first year of life with a bag …. In hospital with pneumonia.
During this whole process of feeling guilty, experiencing the loss of a child and the wonders of a term pregnancy, knowing my husband only felt our child move once in my belly, I started thinking about my childhood dream and how it all turned out.
While on bed rest, I read every baby book and magazine that I could get my hands on. We attended antenatal classes, and in all of those they only told us about the signs of premature labor. In none of the books of magazines was I told about, what happens after the premature birth of a child, the first couple of weeks, those first two years, and beyond.
I was not told that I will be able to go home, while my child will need to stay in hospital. That there is something as early intervention, the difference between actual and corrected age.
Preemies for Africa (previously SA Preemies) was born in March 2002. All I wanted in the beginning was to be able to speak to moms that experience the same feelings, that could share in my trumps and that can pick me up when I was done, somebody that I could return the favor too. All of this resulted in the start of an email chat group, which then turned into more requirements from parents and hospital, and the start of a registered company, with Welfare and Tax Exemption status.
In all the years before Simone’s birth, I did not know about premature birth, nor did I think it could ever happen to me. Preemies for Africa taught me a lot in the last couple of years, the share understanding of what I felt after the birth i.e. guilty, anxiety of not knowing what to expect, the feeling of loss in terms of not having a full term pregnancy, not being able to feel uncomfortable, the loss of taking my child home directly after birth, the loss of putting her to my breast. I found answers to those questions of WHY ME LORD, how can my husband still love me, How can my child love me.
One of our main focus area’s in Preemies for Africa is to help parents and families understand these feelings, help them trough it. Today I know a lot lacked when I was pregnant, information wise, things could have been different. If ever presented with the option of taking another path, I will take the same path, for helping others meant healing myself, healing myself meant being able to help all in Africa deal with this ever growing field. The support of parents is just but one part of whom and what we are.
Thank you for reading Lavonne’s story.
This is Bernadette’s story about her little miracle Ethan
My husband & I both love children and couldn’t wait to start our own family. A month after returning from our honeymoon I stopped taking the pill and meticulously planned our fertility calendar. Much to our surprise two months later we were pregnant. The absolute joy & shear excitement we felt cannot be explained. The next eight months was such an amazing experience. Having our baby growing inside me was truly the most beautiful feeling in the world. My husband & I
couldn’t wait to meet our little boy.
On the 7th of April this year, at 34 weeks, I had to be rushed to hospital because my membranes ruptured. My husband & I both got quite a fright because I was only due to go into hospital for a c-section on the 6th of May. Clearly our little boy had other plans for his Mom and Dad. After seeing the Dr she suggested we stop contractions and delay delivery for a few days because our baby’s lungs wouldn’t be strong enough. I was given two lots of steroids and had to wait patiently for three days until I was 35 weeks. Ethan was born on Thursday the 10th of April at 11H00 weighing 2.3kgs. Straight after delivery he was rushed through to the neo natal ICU where he would spend the next four weeks.
Three days after Ethan’s delivery I was ready to go home but it was minus our little boy. The thought of him lying there sick and all alone without his Mommy & Daddy nearly broke our hearts. My husband and I felt so helpless. It was a very trying time for all of us because the next few weeks were filled with lots of bad news. We were told that our baby boy was very sick. He had congenital pneumonia, his patent ductus arteriosus (PDA) hadn’t closed yet & he also had a hole in the heart (ventricular septal defect) these were both causing excessive blood flow to the lungs. My first reaction was shock and then blame. I blamed myself for not doing everything I could to protect my baby. This is a very natural reaction for any mother. Finally my husband brought me to my senses, I did everything I could. I didn’t drink; I exercised and didn’t eat anything I shouldn’t have while I was pregnant. I’m the kind of person that plans everything down to the finest detail naturally this literally turned my world upside down. Ethan was very sick and I had to put my faith in the very skilled nurses in the neo natal ICU. After 11 days in ICU I got to hold my baby for the very first time. This was one of the most emotional moments I’ve ever experienced.
Finally after 19 days in ICU Ethan’s PDA had still not closed, despite attempts with medication. He went into theatre on the 28th of April to tie if off. Luckily this is a fairly standard procedure that only took an hour but for us in the waiting room that hour felt like a life time. After the PDA was closed Ethan grew stronger and stronger each day and was finally able to come home on the 10th of May. It was the perfect mother’s day gift!
When Ethan was discharged he weighed 2.7kg’s. I was so scared to hold this small baby. His arms and legs were like little sticks. Now months later Ethan is a different baby. He’s over 7kg’s and smiles all the time. I knew I’d love my baby but when I look at him now and know what he’s been through I love him ever more. As for me and my husband this whole experience was very emotional but at the same time it’s brought up so much closer. Without each other’s love and support I don’t think we would have managed. The power of love and faith is the most wonderful thing in the world.
To all the neo natal ICU staff at the Sunninghill Hospital, I take my hat off to them. There was one nurse in particular, Ivy; I’m convinced she is an angel. She took such special care of Ethan. Her dedication, the way she touched and spoke to Ethan was something I can’t explain.
Ethan still has a hole in his heart (VSD) but thankfully after two follow up appointments we’ve discovered that it’s closing. Initially the hole was 4.8mm (which is quite a big for a small baby) now it’s roughly 1mm. We’re hoping & praying it closes completely.
Thank you for reading Bernadette’s story.
This is Jill’s story about her little miracle Jason
After a year of trying to fall pregnant, I eventually went for a laparoscopy and found out after all this time of trying I had endometriosis and a blocked tube. This was corrected in theatre. Two months later to our HUGE delight we found out that I was pregnant in December 2006. I was having a relative smooth pregnancy, no morning sickness or aches and pains but I was always concerned that I was not gaining weight. I went for all my scans and everything seemed to be going smoothly until about 22 weeks. My amniotic fluid was lower than normal and baby’s measurements were behind in growth. At my 24 week scan my gynaecologist was concerned about the amniotic fluid and sent me to a foetal specialist. The specialist did all the measurements and confirmed that my amniotic fluid was lower than normal and the cause could be with baby because after 12 weeks the baby’s urine makes up most of the fluid. The specialist told me that it was still early so there was time for improvement and that I would just get monitored more closely.
I continued to go for my scans and every time I went I was always scared of the outcome because it was never great news. Baby was growing but not at the correct rate that he/she should be and my gynaecologist was checking everything including baby’s heart rate very closely. At 28 weeks my gynaecologist decided that it was time to see the foetal specialist to check things out because the amniotic fluid had not improved, baby was still behind in growth and his/her heart rate was irregular. I saw the specialist again, he did a thorough check on all baby’s measurements and the amniotic fluid. My husband and I were told that “this was not a nice position to be in”. There were four things that he could pick up, mild pyelectasis which is a light dilation of the baby’s kidneys, borderline oligohydramnios which is too little amniotic fluid, possible pelviureteric obstruction with is a kink between baby’s kidney and bladder and baby was behind in growth by about 3 to 4 weeks. I was working at the time and was instructed to go straight to work, pack up my things and go onto strict bed rest until baby arrives and also to be monitored by my gynaecologist twice a week. He told my husband and I that he gives us two weeks and baby would be here. So I did what I was told, shocked my boss and told her that I wouldn’t be back until my maternity leave was over. I went for my scans twice a week and each time we noticed that baby was still not growing and the amniotic fluid was not improving. I was on strict bed rest and was told to monitor baby’s movements during the day. When I got to the day before 31 weeks I went for my scan and things weren’t looking good, baby’s heart rate was very erratic and my gynae was concerned. He told us that baby was tiny but because of his/her heart rate, I was must go downstairs immediately and book myself into hospital, I would be having a caesarean in the morning and that night they would monitor baby’s heart rate.
Well that night if I slept an hour, that was a lot. My Caesar was booked for 8am, I had the spinal done prior and we went into theatre. After some time they thought I was ready, asked me if all was ok but I could still feel when touched, they gave it some more time and still I could feel everything. I was given another dose of meds, more time and still I could wiggle my toes. I was told that I would need to have a general aesthetic in order for them to deliver baby. That was just the scariest thing ever knowing that I would be asleep when baby arrived and waking up not knowing if he/she had made it. They put me under and apparently I was fighting that as well, the doctors had to hold me down because I was fighting them and actually lifting off the theatre table. After all the fuss, my son, Jason was born at 1kg exactly. My first words when I woke up were “is my baby alive”. I was told that baby was fine, is a boy and is 1kg.
Jason went straight to the Neonatal ICU with his paediatrician. The most amazing thing for us was that as small as he was, Jason did not need to be ventilated, he was under a head box for about half an hour and that was it. I only managed to see him that afternoon when they wheeled my whole bed through to the NICU ward. My first thought was goodness he is tiny. He was attached to all sorts of monitors that were stuck on his tiny little body. It was very overwhelming being a mommy for the first time and seeing your TINY son lying there with all these tubes and wires everywhere on his little body. I was just so happy though that he was alive and breathing on his own. NICU was a real bumpy road for us we had plenty good days but plenty bad days as well. I thought the birth would be the hardest part but that was only the beginning of all our struggles. On day 3 we were told by the paediatrician that Jason was not well and his platelet levels had dropped to 15 which was critical. We were obviously shattered but it was in Jason and the paed’s hands and all we could do was watch and wait. He dropped weight to 980 grams. His platelet levels after the medicine increased very slowly to 19, 28, 25, 40, 68, 117, 30 and then from then on they just climbed back into the normal ranges. Jason also battled with Jaundice like most prem babies, was on and off the lights constantly. One day we could see our babies little eyes then the next day he was under the lights again.
We also battled with his haemoglobin levels dropping all the time and getting VERY low. He had to have 2 blood transfusions. Feeding wise and weight wise, things just went so slowly. Weigh day was twice weekly and we couldn’t wait to get to the hospital to find out the weight gains, every gram counted for us and I normally phoned before I got there. It was heart breaking to see how almost every second day they had to take blood in order to check the platelet levels, the haemoglobin levels, the CRP levels for infections etc. BUT slowly but surely our little boy started to get better and better. We watched parents coming in with their prem babies and leaving before us. Some were even just above Jason’s birth weight but they just managed to feed nicely and leave so soon.
Jason battled to feed and gain weight. It was so funny how we got so excited to feed him and feeding consisted of holding the syringe with the NG tube attached and his breast milk goes down his nose into his tummy. But I was there for every feed, every three hours. We only started feeding on day 3 and that started at 3mls every 3 hours. When he got sick, that was a setback, the milk was decreased and weight gain was slower. We were in NICU for 84 days, every day I travelled half an hour and spent the day with my little man. Every night before I went to bed I would phone the NICU ward and just to find out how my little man was. I guess it was my goodnight call and my way of telling Jason that mommy loves him. We left NICU to go home on the 31st August after 84 days. Jason’s discharge weight was 2.2kgs. Our journey back to hospital started almost immediately, we have since been back to various hospitals a further 11 times for various reasons. Jason has had pneumonia 4 times, broncolitus 4 times, two groin hernia operation, ng feeding for weight gain, an endoscope, the Nissen Fundoplication, hernia repair and G tube placement operation and a further endoscope. Jason was diagnosed with severe silent reflux in November 2007.
As Jason was only 2.9kgs then we decided against having the operation due to the risks involved. His reflux just got worse and he would not drink and eat enough. He was basically just having enough to survive. His reflux worsened in July and his eating worsened. We saw the paediatric surgeon again and decided to have the operation. Since the Nissen Fundoplication and G tube placement operation on the 16th September, Jason has done fantastically well. We were told that he was malnourished and at the time of the operation he was 15 months and only weighed 5.3kgs.
The G tube has been a life saver for Jason, without it he would not have survived. Jason is now on a special medicated formula for weight gain and he is now 18 months and about 7.7kgs. At night he is on a feeding pump to assist with milk volumes and weight gain as Jason can only take small volumes at a time. Unfortunately medical aid has declined our application to assist with his feeding expenses as the special milk and pump sets are items that are general scheme exclusion in terms of their rules. The costs involved are HUGE. Jason has just learnt to crawl and is not walking yet. I guess with weight gain he will get there. It is very frustrating for me but at the end of the day I have to look back and see how far Jason has come from 1kg.
In the near future Jason will also need speech therapy to assist with his food aversion, occupational therapy and physio to assist with his walking and milestones and I would also love to get him onto the HOPE program for glycol nutrients to assist his body and immune system.
The main thing is that Jason is doing so well and is on the road to recovery. His weight gain has been wonderful and he is now crawling and holding onto things.
Thank you for reading Jill’s story.
Please keep a look out for our stories and if you know of any preemie moms that need us, or that would like to support other preemie moms ask them to give us a call on 080 773 3643 or send an email to firstname.lastname@example.org
You can also have a look at our web site – www.preemiesforafrica.org for more information about us.