Your Story (Part 1)
Day 1 - Broken
I open my eyes and realise, today is the day. Today I get to meet my little baby I have been baking for 9 glorious months. The little baby I dreamt of and prayed for my whole life. My biggest dream come true.
“For this child I have prayed, and the Lord has granted the desires of my heart” - 1 Samuel 1:27
It’s the morning of the 26th of April 2018 and my world is about to change. My boy is kicking away as always, and my tummy is full of butterflies for what lies ahead. We are just so excited and can’t wait to get to the hospital and deliver this little boy we already love so much.
We arrive at Parklane Hospital very early, as I needed to make sure I get one of those stunning single rooms where the dads can sleep over with you and baby. We had the whole day to rest and wait for 3:30pm. We took some last bump photos, made jokes and was just so excited we could burst!
The time finally came to get into my hospital gown and get wheeled to theater. Looking at all those pre – photos and videos now, almost makes me nauseous. We were so happy and excited, with no idea how our world was about to be rocked.
It has taken me a very, very long time to finally write this story… Daniel’s story, because I knew I had to relive it and go through that agonising trauma again. First paragraph and I’m emotional already, but I really want to write his story, I need to write his story, his beautiful story, his testimony and how great our God is. I owe it to the both of them.
We finally get to the theater. Whoever said a cesarean is “easier” needs a reality check. I have become to hate these stigmas we put on birth. In the end all that matter is if you have delivered a HEALTHY baby. People have so many opinions about birth, I am sorry I ever had those opinions, because whether it’s a natural or a cesarean birth, they both are different experiences in their own right and they both promise you a beautiful baby at the end of it. All we should really be focused on is the healthy baby you get to hold. I did however always want a natural birth from the start, but little boy’s head was rather large and always measuring way above average, plus the scans always showed a big baby and together with my gynecologist, we decided at 35 weeks to opt for a cesarean. And thank God that we did, he wouldn’t likely have survived a natural birth. I thank God every day for my Daniel’s big head. 😉
While my husband, Tian, gets his scrubs on, I get my epidural. It’s not painful at all, but the whole process and scenario is quite daunting and not glamourous or romantic at all. Theaters are cold and clinical and a little bit scary, and I just tried not to pass out from lying on my back (something I could not do during pregnancy) and from my claustrophobia kicking in from losing feeling in my legs.
Tian finally joins me, and the team of doctors start with my incision. A c-section is rather quick, I think it took about five minutes and my baby was out! Tian watched for a second before he had to focus on not passing out. The smell of my burning skin did not help the situation, but thankfully he survived it! And he was such a pillar of support to me, I am truly lucky to have had him by my side.
With a few pulls and (very rough) tugs and the doctor having to extend my initial incision due to that big head not wanting to come out, we finally saw our little Daniel! He was beautiful, and I fell in love in that 2 seconds I got to see him.
This is when it started. The nightmare. When they didn’t immediately give him to me, I knew that this was not right. He also wasn’t crying. He immediately went to the incubator and Tian went to stand by him. I could not see much from where I was lying. I just kept looking at my husband’s face for any clues. And his face said it all, something was not right. Daniel was not responsive and was struggling to breathe. The paediatrician (initial paed) started bagging him and they put him under some heat and plastic bags. All I could see was the paed dropping his little limp arm to check his responsiveness and it kept falling and falling to the ground. All I can remember is hearing the words “floppy arms”, and I knew that was not normal. My heart just sank. My baby can’t breathe, and he is not responsive. It felt like a surreal dream. How could this be happening? This is not the birth we planned, we never even for a second thought something could go wrong. How naive, how spoiled in our thinking. We were in shock and disbelief, our hearts were broken and all we wanted was for our little boy to just please breathe.
It took about 15 to 20 minutes to stitch me up and we then moved to the recovery room. Daniel’s incubator came with and he was now next to me. Still being bagged and still unresponsive. A few decisions were made and at that stage our new paediatrician was called and she arrived – Daniel’s miracle doctor, Dr. Mirjana Lucic. She quickly took control and ordered an emergency x-ray. She looked at the x-ray and my husband saw it too. He all of a sudden became very white and quiet.
Dr. Lucic came to us and said that our baby’s bowls were sitting where his left lung is supposed to be and that is why he cannot breathe properly.
I ask myself what did I just hear? His bowls are where his lung is supposed to be? How is that possible? Can a baby survive like that? Where is his lung sitting then?
Then the doctor briefly said a term we have never heard before – “Your baby has a congenital diaphragmatic hernia”, followed by “we have to intubate him immediately.”
It felt like a bomb went off inside my body and this time I was the one who could not breathe. My body went into complete shock. I started shivering uncontrollably, I could hear my teeth clattering together. I heard the nurses say something and I vaguely remember them giving me some medication. But it did not help. The shock and fear took over my body and I was frozen. What does this mean? What is wrong with my baby? What is this term the doctor just said? Why is my husband so quiet, what did he see? Will my baby survive? So many questions, but all I felt was helpless, scared and broken… I could not help my baby. I could not even hold him, console him, tell him that I’m here with him. I could just manage to reach for his foot as that was closest to me, and I just held on to his little foot as if it was my lifeline, and I started praying.
“Dear Lord, please help him, help my baby. Please hold us in your hands. I am falling, and I don’t think I can survive this. Please don’t do this to me, please don’t take my baby.”
They closed the curtain between me and my baby, so they could intubate him. They knew I wouldn’t have survived seeing them do that to him, I was already in a fragile state. This meant I had to let go of his foot – my lifeline. It was the hardest thing I ever had to do. I can’t even hold my baby while they do this to him. After they intubated him, intubated MY little delicate newborn baby, he could finally breathe. Relief. I could also breathe again.
The doctor came to us again and said that we need to understand that our baby is extremely sick and babies with this condition only has a 30 - 40% chance of survival.
There goes the second bomb. Our hearts dropping to our knees. Our ears struggling to make sense of what we just heard. It’s at this moment we just surrendered. We broke inside, my body has never felt such pain, such numbness. My body was still shaking uncontrollably, but time stood still. A darkness crept over me and I could feel myself falling into nothingness. To hear that the little body I just birthed and have loved for the past 9 months might not make it, broke me. It broke every fiber of me. I had no control of the fear that swept over me, the dread that engulfed my soul or the hurt that took over. I just laid there, frozen in time and broken inside.
A sister then came to me. Lovely Sister Lauren who we would come to love and cherish. And she said something to me that woke me from my slumber. She said that having heard my baby’s shocking chance of survival, I must NOT GIVE UP. We are all he has, and we need to FIGHT. Fight for this little boy and we need to keep the FAITH.
The darkness starts to let go of me and I feel myself coming back. Back to my boy, who I need to FIGHT for. Looking back now, I know that it was God, giving us a message and a command through one of His angels. FIGHT. Have FAITH in ME.
After I heard those words from Sister Lauren, it was like a switch went on in me, and right then and there, I decided that this boy will LIVE. Daniel will LIVE and there is no two ways about it. I started speaking life into this realization. And I prayed again. All I prayed from that moment on was, ‘let him live, let him live, please let my baby live, he is mine and he is Yours and he is meant to live’.
It was time for him to be rushed to the NICU and for me to go back to my room. My husband stayed with Daniel, which meant we had to be separated. Our whole world just shattered to pieces and to top it off, now we have to leave each other. My source of support and love and the only person who knows how I feel. It was unbearable. My child, my husband, both ripped from me. How is this happening? Why us Lord? But then I remember. FAITH. I must have FAITH… ‘I will be with you; I will never leave you nor forsake you.’
They take me to my room, my empty room, full of mocking flowers and balloons, and one very empty crib right next to my bed. The sisters leave me, and I am alone.
I surrender. All emotion, all feelings. A raw sadness crashes over me and I feel numb. BROKEN. I just hold my empty stomach, and cry and ache and long for my baby.
Finally, I start getting sms updates from Tian. He notified family and they are on their way. Daniel is in the NICU and they are getting him stable. I know my baby is small and fragile, but my God is almighty and powerful, I shall not fear.
Our family and friends start arriving. I let out a breath of relief. I am no longer alone. Thank you, Jesus. Tian is with my son, doctors You chose are with my son. Nurses and sisters, You chose are with my son. And most importantly, You are there, You are with my son. I can breathe again.
Our family is just as shocked as we are. Just as broken. It is their first grand-baby. It must be hard to see your grown-up child broken and afraid and there’s nothing you can do. But be there. And they were. Our parents, our sisters, our friends. And it helped, it really helped.
One thing we became truly thankful for is the community God blessed us with. In situations like this, you quickly learn who your real friends are and who you can really rely on. I don’t know what we did to deserve such an army of out-pour of love, support, prayer and kindness. It’s one of the factors that kept us on our feet during this time. And thank you. Thank you from the bottom of our hearts to each person who prayed for our boy. It’s your prayers that kept us all going.
It’s been a long day. We went from excitement to shock to heartbreak all in just a couple of hours. I’m finally reunited with my husband. I can see he is as empty as I am. We don’t need to speak words. We are actually not able to speak from fear of collapsing again. We just know. And we are just trying to hold on. It’s very late, and we need to go to bed, but we can’t. How must we sleep? Our baby is fighting for his life and we can’t do anything. This is not fair. This is surreal. So much uncertainty, so many feelings but only one conclusion. I tell my husband this – our son will survive, he will, and that is that. With some helpful medicine, we go to sleep at around 3am, crying and aching.
Day 2 - Limbo
I wake up at about 5 or 6am from a troublesome sleep. I can feel my legs again. That means I can walk. And that means I am going to my baby. I ask for all my pain medication necessary, so I can make the journey to the NICU. It’s quite a long walk I quickly realise, so I opt for the wheelchair. We get to the NICU and it’s a lot to take in. So many cribs. So many sick and fragile babies. So many parents trying to stay strong. It’s hard to take in. My husband shows me how to wash my hands, there’s so many procedures. You need a degree just to wash your hands! We learnt so much inside that amazing NICU, formed bonds with the most wonderful staff and sisters and I am forever grateful to every single hand that helped my son.
Tian takes me towards his crib and as I approach all I see is machines. Machines upon machines, wires upon wires – so many things! So many new words, like oscillator, central line, blood gas, PICC line and so many more we would come to know by heart. There are things just everywhere. I try to stay calm. I try to breathe. Then I see him. I see my baby again and another bomb goes off inside of me. I try not to pass out. Why? Why, why, why is this happening? He is so little, so exposed, so helpless, so beautiful. It’s the most beautiful baby I have ever seen. Even with a million drips and wires and machines on him, this child is beautiful. I am so in love, it hurts.
‘Before I formed you in the womb, I knew you, before you were born, I set you apart’
I look at my baby. He is sedated. His little body is vibrating because of the oscillator. I wonder if he is in pain, I’m too afraid to ask. I don’t want to know the answer. It’s hard to keep the tears at bay. I want to touch him, but I’m scared. Can I touch a baby with so many things on him? They tell me I can touch his hand. So, I do. And again, I break. With my finger I stroke his little hand and I bow down to his little head and whisper in his ear, ‘Mamma is lief vir jou. Ek is hier. Ek is so lief vir jou.’ The only words I could manage before my throat closes on me.
Those first three days remain quite a blur. We went into limbo almost. We were in a period of awaiting, not knowing what will happen next. Dr. Lucic was by his side that first day, making sure he stays stable. Fighting with us for our baby. Every day I say thank you to God for this incredible doctor he sent our way. She explained to us that he will need surgery. Surgery? On my newborn?
They are just waiting for him to get a bit stronger. The paediatric surgeon came to see him as well as the cardiologist. I can’t even remember when exactly or what they said. I was on autopilot, trying to survive and staying strong for my baby.
On that first day of him being in ICU we went back and forth from our room to the NICU. We spent most of our time on Google, searching for information on CDH, as we had no idea what it was. We came across some scary information and it just increased our anxiety.
Now I am sure you have never heard of the term congenital diaphragmatic hernia (CDH). Neither have I. Some may hear the term diaphragmatic hernia and think, oh it’s just a hernia, that’s not so serious? Some people even said that to our face, but we forgave their ignorance.
I would like to educate you on what CDH really is and hopefully create some awareness around it as it is not well known in South Africa at all. I decided to write a separate blog post on it, as it’s quite extensive, and no, it is not like a normal hernia we all know. You can read about what exactly it is here.
But in short, CDH occurs when the diaphragm muscle — the muscle that separates the chest from the abdomen — fails to close during prenatal development, and the contents from the abdomen (stomach, intestines and/or liver) migrate into the chest through this hole. So with Daniel, his bowls migrated up through the hole and was positioned on top of his left lung. Because of that, his left lung moved to the middle (where his heart should be), which then made his heart and right lung move all the way up towards his right shoulder. Resulting in all his vital organs misplaced. This also meant that his left lung could be vitally underdeveloped. Along with some other complications, explained in the CDH blog.
1 in every 2,500 babies are born with CDH. I tried my hardest to find South African stats, but Google let me down. If anyone knows where I could find SA stats, please let me know. To make it bit more relative to South Africa, both our pediatrician and cardiologist who treated Daniel, treated about four CDH babies (including Daniel) born in the last year (2018). Sadly, Daniel was the only one who survived out of the four. In addition to surgical repair, a CDH baby may require specialized equipment such as the oscillator ventilator, heart lung machine (ECMO) or nitric oxide, Daniel had all of the above.
Day 2 felt like a million years. We were about to be bombarded with medical jargon, surgeons and cardiologists explaining what has to be done in the next few days. Dr. Lucic assembled such a talented team of doctors for our baby, we called them the A team. We were told his operation will be in the next day or two, when he is a bit stronger. We were heartbroken for our baby, he was so little, and he had an immense journey ahead of him. All I knew was that God had him in the palm of his hand, we shall not fear. We decided from then on that we will not google one more thing. We will not even go onto the internet when we hear a new term. We will keep the FAITH. We now put our boy in God’s hands. He is in control. He will take care of him. Our boy is strong, and he has to survive, and he will.
‘Don’t be afraid, for you are very precious to God. Peace! Be encouraged! Be strong!’- Daniel 10:19
Part 2 to follow.