Wednesday, June 10, 2009

My Story

When I became pregnant with my first child, I was engulfed with both excitement and fear not knowing what really to expect. Either way, this baby was more than welcome! I did all the "right" things a mom to be had to do.
Once the news was out someone recommended I become a patient at the local State Hospital. They had the best Maternity Section. I don’t know why I have ever listened to that person because we already had great medical insurance in place with better options. Although the local State Hospital had an excellent reputation, my experience would have been less traumatic if I had gone to my then known General Practitioner. Do I still regret it? Yes but unfortunately it still wouldn’t have changed the outcome.
Although a bit nauseous and tired in the first three months I was perfectly healthy and fit. I normally had low blood pressure and later became a little anemic but even that was considered not too serious. I had my visits on time till my weekly ones approached. Everything seemed to be quiet normal. I only had three ultrasounds of about 2 minutes, which was the average then. The last one was at 36 weeks on June 2nd. The only thing out of the ordinary was that the baby was in breech position. We couldn’t even see what the gender was. All seemed normal. Instinctively I knew the baby wasn’t going to turn around, there was not enough space. I didn’t worry about that because I was in safe hands, right? I was uncomfortable with my ‘big’ belly but what else could one expect having a short upper body and being petite. So far I have only gained a 12kg (± 26lbs) and was considered very healthy.
I had a surprised baby shower and about everything was ready for that much awaited bundle of joy! Boy and was it going to be spoilt rotten! It was the first grandchild on my mothers’ side and the 7th on my husband’s. If this was going to be a boy it was going to be the first to bear the family name. We were ticking the days and excitement was building. I had to quit my job because of an internal legislation which permitted staff only to work up until 32weeks. I was perfectly happy with that because by then I have become too tired and needed to rest. (What a great excuse it was!) I could do the normal house work and then have time to myself too. I read all about babies, having them and all about parenthood. I was prepared! Instinct would kick in so to speak and I was relaxed about the demands a baby have. I wasn’t stressed about the birth itself – millions of mums around the globe had babies for centuries and most of them survived. Right? Why should I then fear this wonderful experience? I hadn’t missed any pre-natal classes and informed my husband in detail. He could remind me what to do and also go through the stages with me. Besides he was very supportive and a lovely person.
Thursday 10 June 1982 – The day* that changed my life forever
Then it happened: Unexpectedly on Thursday June 10th at 5am my waters broke. I must have been dreaming but the next minute I came to my senses I was standing right beside our bed. I was only starting my 37th week. We got ready to go to the hospital. I only had to slip a cozy gown on. I had my husband open my suitcase so I could quickly check if I had everything packed. Funny how things turn out when you had months to prepare for the event in the finest detail, only to have to make sure that everything is still in place. The most important thing was clothes for the newborn when we are discharged, right? How exciting!
As we left our apartment we got into the elevator and I vividly remember when I asked my husband to give ‘us’ a hug as this was the last time that he would do so with me still pregnant. That meant so much to me. We drove slowly to the maternity hospital – after all we were only 10 minutes away. We thought it was funny when the song on the radio had a chore with the words ‘free me’ … I was both excited and a little bit scared.
Arriving there I was made comfortable in one of the delivery rooms. I was given a quick internal by the nurse to see how far I was dilated. Contractions were about 20 minutes apart. After a while the doctor on duty came to see me. (Till this day I don’t know who he was) I told him about having an ultra sound only a few days ago and that the baby was according to me, still in breech position. He was very abrupt and the next minute he had his hand in my you know what reaching as far as he could. It hurt badly and it reminded me of a Vet doing 'what you call it" on a cow. I was angry and upset with this. Dr Jerk left and after a while returned only to tell us that he needs to send me for x-rays. So there I was: off to x-rays with a big belly and having strong contractions 15 minutes apart. The x-rays confirmed what I already knew and the contractions started getting much stronger. Dr Jerk explained to my husband that he is now going to give me an epidural for the pain and also wants me to dilate completely. If the baby’s head got stuck they will be on stand by for a C-section. Instinctively I knew this was horribly wrong but felt helpless. After all I was supposed to be in the best hands? I was so disheartened and started crying. By now my baby’s feet was ‘hanging out’ and I was told not to push at all. All my husband could do was to hold my hand and comfort me. The worst has not even begun. The needle of the epidural was inserted and I found it so hard to bend my body forward – my short upper body made it even harder. Every now and again a nurse would come to check on my progress. After a few minutes my lower body was supposed to start feeling numb but instead I had an allergic reaction and I felt as if I had been pushed into earth… It was so weird because I remember telling my husband it felt like I can’t breathe and that it feels like they have put a ton of bricks on me… it was a heaviness I couldn’t explain. I could still feel the contractions and I found it even harder to withhold the urge to push. Tears now flowed uncontrollably and although my husband tried his best to comfort me, I just snapped at him. The best he could do was to give me a towel to bite onto.
It was just unbearable to try and not give way to the heavy contractions. Dr Jerk came back only to ask whether a couple of students may join us to witness a breech birth. I was very upset and just refused. That was very insensitive and it made me feel like an Experiment. I was vulnerable. At this stage the nurse showed my husband our baby’s feet… and I could barely keep myself together. I still cried a lot and I learnt firsthand what the true meaning of distress was. Then when I thought that I was going to give up the team walked in and I was given the all clear. One push and he announced himself with small cries. This was the best experience of relief one could ever have had. It was 11H26 am. He weighed 2.555kg (5 pounds 6 ounces) and was 47cm long (18.5 inches).
They whisked him away and I asked my husband what the sex of our baby was. Then they wrapped him and handed him to my husband. After a while I held him for a few seconds. They took him away and served me with lunch right there. I wasn’t hungry at all but in euphoria of happiness!
My husband kissed me and said he was now going to call everybody with the good news and that he will see me soon. When I was put in my bed I felt how numb my body has become… I had little feeling in my lower body. Was this the epidural only now kicking in? Who cares because I must have been the happiest new mom on earth!
At about 4pm I had my first visitors – my dearest mother-in-law came to see me together with my husband. Apart from receiving flowers she gave me a small yellow jersey and a card that matched just that! She was thrilled for us. My mom had been away on our game farm about 5½ hours drive from Pretoria. With no telephones in that area my step dad was going to drive there on Friday, so they would be back on Sunday.
Later the nurse came to remove the epidural from my back. At 7pm dad came to visit together with my step mom. He was upset and shocked to see my face swollen and asked what had happened. Step mom quickly told him that he shouldn’t be asking me because it was clear that I did not give birth easily. He was very concerned and I told him that I was alright. I couldn’t wait for visitors to leave because I wanted to go see my precious little angel again. He was so beautiful and had long, straight black hair. I was amazed at just how perfect he was. We decided to give him his Daddy’s names.
The next day I got up early, had another great shower and went to see my precious baby before I had to have my breakfast. He was still in his incubator and I saw he had a tube through his nose. He was sleeping peacefully. Thinking about it now I realized how odd everything was. No one informed us that they suspected something wrong or even talked to us openly about his state of health. No one even gave us an indication of how long he was going to spend in NICU. I on the other hand assumed that it was going to be a few days up and until he gains weight and feeds well. Question I ask now was why didn’t I demand the truth? Simply because I did not suspect anything wrong. After breakfast I went to see him again. This time I tried to breastfed him. He would suckle a while and just doze off again. We decided it was best to express my breast milk so he at least gets a chance to build his immune system. This would become my routine for the next few days. I would only go up to my room to have something to eat or rest a bit and then go back to sit beside my precious bundle of joy. I would become so familiar with two songs in particular which played on the radio in NICU: Elton John’s ‘Blue Eyes’ and Simply Red’s “Holding back the years”. Every time I laid eyes on my little boy I couldn’t help myself but to fall in love all over again. One morning a father would rush in NICU with the doctor holding their newborn – the doctor had him on the examination table and they tried to revive him but they couldn’t. It was upset and thought about him all day. I couldn't imagine losing my baby.
By now I got to know some of the nurses and even a little about the babies as well. Next to J was a beautiful timid baby girl born with Trisomy 18 and the outcome did not look good. I knew so little about it then. Amongst others there has been a tiny boy who had been born at 26 weeks gestation. He had been there for just over 2 months and was well on his way making good progress. It must have been quite an ordeal for his parents. I couldn’t wait for my boy to be out of NCIU and for us to go home! His feet wasn’t so swollen and looked perfectly normal. After the birth it looked like Noddy’s feet. My poor darling – it must have been hard for him too. I love him. For the first time in my life I had something no one could ever take from me. I was an only child and I am going to make sure he’s not! I would love to have a little sister for him too! Phew am I crazy? After all I have been through here I was thinking of doing it all over again! Okay so maybe when the time is right he will have a sister. Only this time I will make sure I am in genuine good hands. I want the best gynecologist…. I was dreaming big time … I was so happy and it had never felt so good! Apart from being tube fed he looked great! His tiny hand held onto my finger as if to show me he knew I was there.
Every day I got more excited knowing I was a mommy with a beautiful little boy! My favorite sister-in-law A came to visit with her husband and two small children. Because they weren’t allowed inside we sat in the garden. I was also looking forward to see my mom who was now on her way back to Pretoria. Yeah this little Rascal of mine surely surprised us by being born 3 weeks earlier! Who cares, I was never more ready for him in my life! Mom couldn’t wait to come and see us so when she finally arrived late afternoon I was too eager to show off her first grandchild. I took my little one carefully from his incubator, wrapped him up and showed him to mom, looking through the glass. A while after that the test results came back and my little one had to spend some time under the lights – he had jaundice. Another setback I thought but I was assured that they normally only spend 3 days under the lights.
As the days went by I spent more time with my baby and talked to him. The NCIU were busy as usual more babies came in and more were discharged. Only a few stayed behind. The others were mostly just there as a routine observation as they were born by C-section.
One morning just after I had my breakfast I went down to see my boy. I was so shocked to see that they had what looked like a movable x-ray machine over my baby’s incubator! I asked what was going on. The staff just said that he is a very sick baby and they are running some tests and that they would talk to us soon. I should in the meantime wait in my hospital room. That was the first time anyone said something like that about my baby’s health! I couldn’t understand and my head started spinning, all of a sudden a million things went through my mind. Why? How? I couldn’t get hold of my husband and panicked then called my mom. (If I remember correctly my husband was sent away for the day to do some road tests for his work). By now I sobbed and told her what I had seen and what I was told. Why weren’t we informed before they ran the ‘tests’? At least we would then have been prepared for whatever the outcome would have been. My step dad had lots of contacts in the medical world. One of his cousins was Pediatrician. I asked mom to contact him to see if he could get more info from the hospital. Maybe he could even see if he can have a look at our son first hand. I spent the rest of the day sobbing and praying that my baby would be okay. I did go and see my baby later but I didn’t question the staff about anything. I was angry, felt betrayed and shocked. I know NICU is not a place for chit chat and that they had a huge responsibility but the least they could do was to treat us as humans with feelings. Nothing could have prepared me for the roller coaster and enormity of the stress I was about to go through. The waiting game began…
With a sleepless night behind me and still very upset and sad I asked to be discharged from hospital. The staff didn’t want me to hang around in the NICU and I could rather come and see my son than sit there waiting anxiously. (I don’t know why because I wasn’t in their way at all!!) By this time my step dad must have spoken to the Hospital Pediatrician. He must have informed him that they suspected that our son had a fatal heart defect. Hypoplastic Left Heart Syndrome. Because my husband was still away for work I decided to spend the day with mom. Looking back this was one of the days I treasured because in my fragile status of mind, mom explained to me the full extent of our baby’s illness. She was a nurse herself years before and broke the news as gentle as she could. She explained that his left chamber of his heart was under developed also that the heart was the mirror image of what it was supposed to be. Oxygen rich blood didn’t reach his body and his heart was going to fail eventually. Vital organs fail first and then ultimately his tiny heart. There is nothing they could do for him. I remember vividly my reaction: ‘So it is just going to be a matter of time when he dies?’ I was heartbroken but not without hope. Hope. Yeah I prayed and hoped for a miracle. That night we went to see him again and took more photos without disturbing him. I noticed that he was getting oxygen: 45% my husband and I didn’t talk much about his illness – we mutually just instinctively knew what our thoughts were. Maybe we were in denial too… this only happened to other people right? He was 7 days old and the signs of stress on his little body were showing.
I can’t recall how the following day went. I think I spent the day with mom. I would have loved to sit by my baby’s side but could only do so strictly during visitor’s hours. Finally we went to visit him in NCIU that afternoon. I was very upset when I saw the oxygen levels were increased to 65%. I knew that this was surely not a good sign but just kept it to myself. He looked pretty pink and healthy but I could see his heart was struggling. His eyes were puffy and I was later told that this is a sign of heart failure. Both of us just stood there and just gazed upon this fragile little boy hanging in there. We had nothing to say to each other. Neither did the staff that was on duty on that night. I wanted to grab him and run away. I couldn’t stand him suffering. After a few minutes we left quietly. My only desire was for us not to go home but to spend more time with him. I then asked my husband not to drive home straight away but to go to the Union Buildings. We parked the car at the top terrace and just stared into the night at all the stars and city lights… when all of a sudden I started feeling anxious and wanted to go home immediately. Without saying a word, my husband just started the car. We were barely parked there for 2 minutes… Upon unlocking the front door I heard the phone rang. I instinctively ran towards it and answered. A stranger on the other side asked to speak to my husband. I went stone cold. I just knew. The moment I dreaded the most was here. It was the hospital and they wanted us to come as quickly as we could because they feared our little boy was not going to make it through the night. My husband then quickly called his parents who then called mine. We rushed to hospital. Neither of us said anything.
Upon arriving there we rushed through the NICU doors without even scrubbing and putting on sterilized coats. Our precious baby boy was now connected to a heart monitor. Soon both our parents were there together with my god parents. I can’t even remember what was being said because I was on a different planet. His Pediatrician was there I think and a senior nurse. In an instant she scooped up my baby to transfer him onto a bigger open incubator. He uttered a cry and she apologized for her hands being so cold. (I could never forget that cry) All of us were just standing there too shocked to do or say anything. I just couldn’t help but stare at the heart monitor only to see how his heartbeat becomes slower …. Until it became a straight line ...A continuous beep! As a last resort she gave him an injection in his arm to try to revive him. To no avail. I could have died right there because my heart just sank to my feet. I looked at the clock…. It was 7:25pm. June 18th. No words could ever describe the emotions that followed. Obviously our families were very concerned for us but instead of turning around to walk away I begged softly if I could hold my son one more last time. Tears started streaming from my eyes. I wanted to love him, cuddle him and tell him how much I wanted him with us. They refused. Their excuse was that it was going to be too traumatic for me and that I would never forget it. The world crumbled around me. Devastated and so intense at that point that I couldn't string a sentence together without pausing for long moments. Our family wanted us to stay over with them for the night but both of us declined. We wanted to be alone, together. The staff gave us each sleeping tablets and said we should head straight home and try and get some sleep. (Thinking about that today horrifies me…) All we could do was to find comfort in each other arms. We broke down together. Every now and again we would wake up only to start crying all over again, hoping that this is actually a nightmare. We were heartbroken. Devastated is an understatement. This couldn’t be happening to us.
When the morning came reality still hasn’t sunk in. I tried very hard to be strong and I decided that we should immediately pack our entire baby’s stuff and store it away from home. I thought by not having it around might ease the heartache. Kind of forcing myself to move on… So the family helped my husband to put everything away and also started arranging the funeral. We were very fortunate to have a loving, caring family. Still it was as if I had a nightmare. Ever since I learned of my baby’s illness it was as if I lost track of time and reality. I felt lost in myself. Every now and again I had to remind myself that he was gone. But I needed the evidence. I wanted confirmation so to speak. I know it might be hard to understand this now. Maybe you do.
I wanted to go to the morgue myself and take him to the funeral undertaker myself. (We had requested a post mortem report so we had to wait for his little body to be released first.) The family was concerned and thought I had lost my marbles completely but arranged for a permit anyway. I just knew I had to do it. I wanted to see my little baby angel one more last time and just maybe then I would accept that he is no longer here on earth with us.
Love and support in many ways came from all over. People I didn’t even know sent flowers. They were all over in the place even on the floor. I couldn’t feel anything else but emptiness as if draped around me.
The day before the funeral my husband and I went to the morgue. My dearest mother in law wanted to come with us but I declined her offer. I let my husband go in while I waited in the car. He came back with our baby wrapped in a sheet. He gave him to me. His little face was covered and I just held him. He was cold. It felt incredibly weird. It was like I was looking in from a distance…
Upon arriving at the Undertaker I saw my mom in law as well as my husband’s sister A together with her husband, G. They came to support us – how sweet. I put my baby on the table and took out clothes I brought him to wear. When I unwrapped him everything inside me died. I felt so strong and distant… he did not look like the baby I knew. He was very pale and his toe- and fingernails were blue. It felt as if it was someone else’s precious boy. Everybody thought I was going to have a meltdown and there I was: totally emotionless. G offered to go buy him a beanie to cover the scar from the post mortem. I haven’t thought about that. He came back with a beautiful striped blue one.
The day of the funeral was somber. I had moments where the tears flowed but overall I felt completely distant. Friends/family didn’t know what to say. They didn’t have the right words. Does anyone ever have them? I guess it was very uncomfortable for them. Just being there for us was enough to me. This was June 22nd.
Life goes on.
At least for those who attended the funeral? A Chapter closes and a new one unfolds… supposedly. The following days were filled with nothing but emptiness. I was amazed that my body was still functioning because I didn’t even want to breathe. I remember first how much I hated seeing someone pregnant, I wanted to scream and shout! I wanted to stop the world. I wanted everyone to suffer the enormity of pain that I had. At least I wanted the world to acknowledge mine. I was a heavily wounded soul. No one spoke about my boy again. Did people think they were going to upset me by just talking about him? Quite the opposite but this was the 1980’s. You didn’t talk about such things. No counseling was offered. The Pediatrician just made a courtesy call to say that he wasn’t even going to run tests (genetically) on us because this only happens 1 in 5 million. He is positive that we will have normal healthy babies in future. That was it.
I wanted to get back to a ‘normal’ life… if you can call it that. I started looking for a job so I could focus on something else but my grief. I started a new career in the Insurance Industry on July 1st. Nine days after I buried my son. Nine days. People were kind but no one took the time to talk to me about my son. I did my job well but the rest of ‘me’ was reserved for myself. Have you ever cried from your heart? No tears and not a sound or any other visible sign that you were hurting so badly? I built a huge wall around myself. We would try to go to his grave every Sunday. It gave me some kind of comfort although I knew he wasn’t there. I could cry if I wanted to right there and no one would question me. I lost so much weight that I looked like an anorexic. I could not only feel my ribs but I could see them too. I guess I didn’t eat much. I wanted to die. There was nothing for me to live for. Selfish of me? I knew my husband was devastated too but he didn’t talk about it. I became a new person to myself, the only feeling I had was called grief. Raw and incomparable in truth. The old spontaneous woman full of laughter was left behind somewhere. Life didn’t have meaning without my son. I was wounded with an open scar. No painkiller available. I learnt that there are stages of grief too.
I wondered that the person who took the time to study, identify these stages experienced what I have? Do people know where we come from? When in grief are feelings unpredictable, unexplainable, out of control? To me, yes. There was no one who I could have turned to. Who would have understood me? One of my sisters in law’s said I should be angry at someone. Blame someone. Aargh, would it bring my baby back? Where is the comfort? Someone said have another baby. Oh, so you just replace them?
Angry? Yes I was. I was angry at the hospital staff for not telling us anything about my son’s illness. For making we feel like another number. For not letting me hold my son for the last time, saying our goodbyes. The moment when he took his last breath seeing him lying there ever so still is forever engraved in my soul. Why did he have to die lonely? He could have been in my loving arms!!! That was the infection in the wound so to speak. How could they have been so heartless? I am sure some of them must have had their own children …. I had only one last chance to love him when he was still in the world. I chance I was denied. I don’t even have hand or footprints. No photo of me cradling him in my arms.
Over the course of the days I could feel anger, denial the next minute with a flash of acceptance and then depression all over again. A vicious cycle of self destruction. Sometimes I wished I could just turn the clock back so I could just love him, have him in my arms, and kiss him. At least he would have died smothered in pure love. I missed out on all the milestones he would have had. I compared all babies of the same age and wondered how he would have looked having chubby cheeks... smiling… etc.
Two years, 11 months and 27days* after the day that changed my life.
I started working for a new company and met two other lovely ladies. The three of us were the only female staff in a group of about twenty. I don’t know how it happened but we discovered that each of us had lost a baby. Finally I was able to talk to someone who understood. Jeanette had a miscarriage at about 20 weeks and Amanda’s little boy was stillborn full term. That brought some healing. How absurd, that someone else’s heartache can bring comfort? It did. We had something special in common. Angels in heaven. Soon afterwards I fell pregnant again. Everybody was super excited and treated me super special. It was a ‘normal’ pregnancy and I had a great doctor. I was confident in him to take good care of us. My due date was June 12th, two days after my son’s 3rd birthday. It turns out that this baby was also in breech position and because it was a bit smaller doctor was going to let me go into labor first then perform a emergency C-section. So it happened that ‘M’ was born at 05H40 on June 7th by c-section weighing 2.550kg. (5 pounds 6 ounces) She was a healthy pink bundle of joy. The first time I saw her was around 11am. Yeah, that was when I finally came around. Didn’t even know what the gender was. The ward nurse was kind enough to bring her to me: with a blanked wrapped around her she looked like a parcel! She opened her eyes and looked at me when she heard my voice. I was ecstatic and instantly, madly in love with her.
She was perfectly healthy and we were both discharged after 7 days. Then it hit me again. With all the joy there was sadness too. I bawled my eyes out when I looked at her because I could have had the same joy with Baby J… It just struck me on just how much I have missed out. I had my eyes on her the whole time and I couldn’t go to her crib a million times too many. I had to make sure she was okay. I would sometimes shake her gently just to make sure she was still breathing! It took some time and the depression disappeared slowly. I thought of J often but I still reserved my feelings to myself.
Four years, 10 months and 14 days after the day that changed my life* my children had welcomed a new sister. Baby V was born at 10H40 on April 25th.weighing 2.700kg. (5 pounds 9 ounces) Another healthy bundle of joy! I admit I wanted a boy but that the two sisters would be great mates. I hadn’t had a sister whom I have grown up with so at least they have what I had missed out on. The birth was a horrible experience of which I don’t want to get into. She was also born by an emergency C-section. Almost a full twelve hours after I had gone into labor. I begun to sank into a terrible depression. On top of that my beloved dog died: the one I was given shortly after Baby J’s death. He was super precious to me and I couldn’t stand losing him too. He was my doggie boy who enriched my life and other’s too. Baby V was gorgeous but we couldn’t bond the way I wanted. I tried to seek answers within me but failed to do so. One night we watched a program about post natal depression and I realized that this was me. I made plans to see a psychologist. I needed help and I needed it fast. Here I was with two beautiful children and I was miserable as ever. Baby V was a true model baby: she did everything to make life easier for her mommy. She slept through at just 6 weeks old! She was just what some mommies only dream of. She laughed out loud when she was only 3 weeks old! Believe it or not! Apart from some a milk allergies she started thriving at only 3 months old.
I had a wonderful psychologist. He was a calm and kind person. He briefly asked me about the history I had, starting at the time I was able to recall my childhood till then. He then asked me to write a ‘book’ on everything, absolutely all that I can remember; I had to put all my feelings on paper. He wanted me to spare no detail. Only after I have done that, handed him the ‘book’ he would then call me to make an appointment to discuss his findings.
After three, long, terrible weeks I was done. I was emotionally drained. I cried oceans. My family was great putting up with me. After my psychologist read it he called me. At his office he explained to me why he asked me to write all and he suggested what he thought I should do. I don’t have to go into detail about that because I would need to reveal my biography so to speak and this is Baby J’s page, not mine. Bottom line is that I got rid of all those negative experiences/emotions and I could put the past behind me and live on to be a great mum to my children. In writing I worked through my childhood issues as well as my incomprehensible grief. It took awhile for it all to sink in. I realized that life does go on. I could see it. Baby J would have wanted me to move on and live life fullest. To do the best I could. I must admit I was on Prozac for 3 months. To me that was a ‘wonder’ drug. It worked great for me. It not only helped me take care of the daily demands a baby and a toddler had but also gave me a supernatural peace. If I say you could have dropped a bomb beside me without me blinking an eye, I wasn’t lying. It was great and honestly did just the thing for me. After 3 repeats of courses I did not wean myself off it, I just went cold turkey without any nasty side effects.
I could smell the roses again. I had excelled in my job and I was in control of my life again. Although the empty space Baby J left was still there, I enjoyed my little girls more. Only this time I had some kind of understanding and ultimately handle it better.
Eight years, 7months and 4 days* later my children welcomed a beautiful baby brother into their world. Baby G was born at 23H45 on January 14th weighing 3.000kg.(6 pounds 6 ounces) I went into labor 3 weeks prematurely but thanks to my OB he was only born 2 weeks early! It was as if the boys were more in a hurry than the girls. It was another emergency C-section but only this time ‘perfect’. He was beautiful! My favorite sister in law A was there at dawn, 7 hours after he was born. She had sneaked in and she saw him before he had his first bath. She said she wanted to see him just in case…. It didn’t upset me at all. It was super sweet of her to drive a couple of hours only to be the first to see him. She blessed me. There had been no doubt in my mind that my new born son wasn’t anything else but perfectly healthy. I had only laid eyes on him briefly at 1:30am and couldn’t focus properly. (Without my contact lenses and still heavily drugged the nurse could only giggle at me trying to get to see my son.) I had the most wonderful Gynecologist and he took care of me in a very special way. He made up for all the bad experiences I had giving birth. God bless him too. The girls were so thrilled. So was their father. I couldn’t get enough of him; I smothered him with pure love and could hold him forever. We were both discharged 33 hours and 15 minutes after he was born! How good is that!
I still get days where I could get teary and miss Baby J. I remember on his 10th birthday was one of those. I missed him terribly. It was also the day I had to give him back to God. I had (still do) a wonderful girlfriend that helped me deal with the underlying pain and at one of our Bible study groups we had something like a ceremony. Like I said I then gave him back to God. Sometimes I still wonder how life would have been if he was still with us. As babies he and his baby sister V looked very alike when born. Baby M and G looked more alike, not like all of them bare a very strong resemblance to each other. Still today when people see them it’s obvious that they are siblings.
I have never hid the fact from my children that they had an elder brother. They would talk about him and sometimes would say they miss having him around. I remember one specific day where G came running towards me, crying. He was about 3 years old. When I asked him why he was so upset he said that he misses J. I was surprised because up to then I haven’t told him about his brother. I wanted to wait a bit till he could fully understand. It so happened that his sisters told him. I comforted him and try to explain that J is still around and watching over us. It was okay for him to miss him, ‘cause Mommy misses him too. One day we would all be together again.
As the years go by I found comfort in knowing we could never be apart forever. Some days I feel his presence very strong. How do I know that? A mother just knows doesn’t she? I still have his winter blanket and his first toy. I am at peace now. I have learned to live with it. I don’t dwell on my grief anymore. I do however bawl my eyes out when I read of others who experienced a loss of a child. I feel what they feel and it hurts me just as much. I want to hug them. I want to make all the heartache and emptiness disappear. No one has to go through this. No one.
None of the doctors we asked afterwards were able to give us a reason as to what caused Baby J’s heart defect. It is not a hereditary condition. The only explanation they could give is that the foetal heart forms within the first few weeks after conception and it was during this time that his heart did not form correctly. About 6 months after my baby died another boy, Matthew Ash was born. His case was widely published in the papers. They had flown him to the USA from South Africa but he lived only for a couple of weeks. Then I remember Baby Faye whom had received a baboon heart. Of course when everything was done to try and save them I thought why couldn’t they tried to save my baby? Prof Christian Barnard made a comment then which made me think. He said there is nothing anyone can do to save babies that were born with such a fatal heart disease. He was the best Heart Specialist in the world at that stage. I don’t judge any parent today trying everything to save their child because technology changes by the day. If it were available then I would have grabbed any opportunity given to save my baby.


  1. Thank you for sharing your story of baby J with us, and he was a beautiful baby! I'm sure it was an emotional experience for you to put your babyloss story out in bloggingland, and I am proud of the strength that you had to muster to do this.

    What a blessing to have 3 more children after baby J, although we know that it doesn't take the pain away.

  2. Your words touched me so deeply, so much of what you said I could relate to. Thank you so much for sharing your story, everytime I hear another story its bittersweet, because it makes me feel somewhat 'normal' in my emotions and at the same time kills me a little more knowing another child has been taken. God Bless you and ALL of your children!

  3. My dearest little friend, O M G - what HELL you have been through..... I feel so honoured and blessed that you sent this to me first, to read. But what a (beautifully written, but such a very sad) story you have been so brave to write about. I bet you balled your eyes out writing out all the pain you went through, both physically and emotionally. One can hardly believe we get this kind of treatment ...! With me too, they never said much to one in the maternity hospitals in RSA but always bossy, cold and just shoved the enema up and told you to go to the toilet! I nearly lost my one son down the toilet!!! I too, lost or should I say miscarried, my 1st baby, but it was at home and I was not very far into the pregnancy. Still awful tho' but what you went through was not only shameful but downright disgusting and heartless on the part of the doctor and the staff. Well done my darling for getting all this heartache down onto paper about your "Special Little Boy". God Bless and feel free to contact me anytime D.xoxox

  4. I am so touched that 27 years later you are sharing him with us. Thank you.

  5. Wow, thank you for posting your story. I am sorry that they didn't let you hold your little boy at the very end. I am so thankful everyday that I was there, and privileged, to hold my son during his final heartbearts.

  6. Thank you for sharing your story. My first son, Logan passed away at the age of 7 1/2 weeks old. He had HLHS. His 5th birthday is coming up in February and I am having a hard time with it. I miss him so much. Logan has 2 younger brothers, they keep me busy, but Logan is always there in my heart.

  7. Thank You for posting your experience. While the tears are still pouring i dont feel so alone. I lost my daughter to HLHS on October 29,2009 and am still trying to make to the end of each day. It is encouraging to know that you went on to have healthy children! God Bless you and your family and again thank you for sharing.