The Start of the Beginning - Part 1
TRIGGER WARNING: this blog details arrest, resuscitation and medical procedures which readers may find triggering and distressing.
On June 12, 2019 we welcomed our second son Timothy into the world, by planned caesarean at 39 weeks. The start was promising, he was alert and curious and vocal, weighing in at a solid 8lb 3oz.
My pregnancy had been uncomplicated, despite flying to Australia and New Zealand around 25 weeks for a fortnight, suffering unbearable and persistent Braxton Hicks from 21 weeks, awful itching of the soles of my feet and palms of my hands, and two occurrences of "elephant foot" which earned me lots of poking and prodding, hours on the hard seats of A&E and MAU, two scans for thromboses, and shots of Clexane. Mental health is another post all of its own.
After experiencing a very non-vocal baby when our first son Christopher was born by emergency caesarean, it was quite the shock to hear this little guy expressing himself. Whilst adjusting to the bizarre reality that I had just had another baby, and it was indeed a boy as I had predicted at 12 weeks when on ultrasound the baby looked identical to his brother at the same gestation, I came to an uncomfortable realisation. I could move my right foot. And I could feel. Little insight: it is not pleasant to be able to feel yourself being reattached after major surgery. Mercifully, local anaesthetic meant I could get through the last lot of stitches. Darran, Rebecca our midwife, and Timothy exited theatre for recovery.
It had been a much more stressful delivery for me than my emergency caesarean, and I knew I'd lost more blood because they had me change onto a new bed with clean linens which hadn't happened last time. But it was over, my last pregnancy was finished, baby was here safely, and I was a Mama to two boys.
Back in recovery, we attempted to get him latched to start feeding and he continued his loud cries. I felt frustrated not getting the latch instantaneously - I prided myself on being an extended breastfeeder and his big brother had only finished his feeding journey the night before after 37.5 months. I persevered, and felt like I was finally making progress enough to call my Mum in Australia with the news. Our midwife went to theatre for the delivery of the next baby. Darran was speaking with his parents, and as my call finished, sent a text to our NCT friend who was looking after Christopher to pass along that it had been a boy.
As I hung up, Darran suddenly said, "has he fallen asleep? He's very still..."
Not wanting to break the latch I had tried so hard to get, I placed my fingers on his intercostals - an instinctive response as a singer to check for calmness of inhalation. I couldn't feel anything. I shifted his little body slightly away from my chest, and placed my fingers on his own chest. There was no rise and fall. I could barely feel his heart. I lifted his face away from the breast, and his frozen expression will stay with me until the very end. His skin had become a mottled grey/brown.
"Do we need help?"
I can't remember if I spoke a reply or just nodded. I can't remember if I ever said that I couldn't feel him breathing. All I can remember is this crushing weight descending upon me, and blind fear.
Darran went straight for the recovery nurse outside my curtains and said we needed help.
She followed him in, took one look, and before we could inhale again, she grabbed him and ran.
The alarms blared.
The most primal cry escaped me.
I couldn't stop.
He was gone. My baby was dead.
All I could see were the blue curtains. Darran had seen her leave the room, with our newborn baby floppy in her arms.
I found out two days later that the Labour Ward Matron had been the first to respond to the call. She had begun resuscitation whilst the NICU doctors dropped and ran from across the hall. When she reached him, she told us, he was completely white.
I was frozen. Sat bolt upright despite having just had major abdominal surgery. I remember while I was crying having this moment where I felt incredibly guilty for the couple in the bay next to us who had just returned from the delivery of their baby and had to listen to me. Guilty that I was ruining their first moments.
The staff at King's College Hospital administered aggressive resuscitation, and they were able to bring him back. It had taken 2 minutes to restore his breathing, but over 20 minutes before his heart rate would remain above 100 BPM.
With blood gases confirming that he had been deprived of oxygen, and in both kidney and liver failure, Timothy was moved into a transport incubator and rushed across the hall into the NICU. Darran was sent with him, and the Anthony Nolan nurse on shift was sent to sit with me so I wouldn't be alone. I have no idea how long she was there, or for how long Darran was gone.
At the moment that those alarms started, any semblance of time had broken.
Each time I checked my phone that day, I had no clue what the hours really meant or how time was passing. I have significant gaps of time, just the next period of memory where people had re-entered my physical space.
The Neonatal consultant, Carolina, and her Registrar, Becky, returned to update me. Because he had suffered hypoxic ischaemia (oxygen deprivation), they had taken the decision to place him into a hypothermic state for the next 72 hours in order to give his brain the best chance of recovery and in the hope of avoiding further brain injury. He was on a ventilator. There were no guarantees, only steps they could take in the hope for the best.
I remember they said they were doing everything they could, and that they would be back when they could. More time was passing. I was well and truly in control of my legs, which had honestly happened quickly after that foot woke up during the surgery anyway, and the decision was made to move me from Recovery to Transitional Care in readiness for discharge to Postnatal.
I was in agony. I couldn't feel my physical pain and was still sat at a 90 degree angle, but my whole body felt like it was being ripped apart from every single fibre in every single direction. I know I talked to my friend Claire, I remember she said she would be praying.
In TC, Becky the Registrar came back to see me, along with the anaesthetic nurse from theatre. Becky did not come with good news. Shortly after Timothy's arrival into ICU he began having multiple and repeated seizures which they were struggling to control. The nurse said the whole surgical staff were in shock. Nobody knew what the hell had happened, how it had gone so wrong.
I was transferred to Postnatal, my arms empty and my face haggard. They put me in a private room on the Antenatal side of the ward, entering through the back doors, so to speak, to protect me from being wheeled through the entire Postnatal ward, resplendent with mothers and brand new babies.
Around 6pm, Darran went back to the NICU for an update before he had to collect Christopher and leave me for the night. They had asked us to stay away for the initial hours until he was settled and stabilised. He returned, having spoken to the evening consultant, Theo. Timothy was still suffering seizures and they were still uncontrolled. A third drug was being added in the hope it would be the saviour. If the seizures continued like they were, the outcome was bleak.
Darran had to go, and I was alone. A health care assistant came by as he was leaving, and when she heard baby was upstairs, she insisted I wasn't to wait for a midwife to become available so I could be taken up in a wheelchair: she was going to take me herself, and straight away. I wish I could remember her name - she came back to see me a few days later, and then a third time, and I could barely remember her face as it was.
We were buzzed into the Neonatal Ward, doors I would come to know so well, and there was a shift in the air. I scrubbed in at the wash trough, feeling a strange blend of emotion. You see, I'd done this before with Christopher. He was admitted into NICU at 8 hours old, with breathing difficulties, and was away from me for three days. I knew how this unit worked, on the surface at least, and I knew exactly how it looked.
Timothy was even in the same room, ICU2, and on the same side, only he'd picked up the window space whereas his brother had been in the middle.
I can't tell you a lot about that visit. I tried to get what pictures I could, the little hands and feet. I attempted to take in my baby, but it was impossible to escape the wires and tubes.
He was laid on a cooling mat, and wrapped in a cooling vest, attached to the Criticool machine which was keeping his body temperature at 33 degrees; hypothermic. His head was hidden within a little hat, tied across the ventilator tube into his mouth. There was a wire into his forehead vein, cannula lines into his hand and foot, lots of needle marks on his poor little hands, and a nasal gastric tube in place. I later found he had lines through his navel as well. He was really puffy and swollen, and I felt so foreign to him and him to me.
I could only sit and place my finger into his little palm, and hope he knew I was there.
That first night, hoping beyond hope that his seizures would stop and he would keep fighting were excruciating. I barely slept, expressing colostrum by hand around the clock... and watching my phone, terrified it would ring with news or that a midwife would come to get me.
I cannot express the relief that the call, or a hand on my shoulder, never came, and that when I could get taken up in the wheelchair the next morning, he was still fighting.
Incredibly, with the efforts of the NICU staff - and I like to think a hell of a lot of positive thoughts and prayers from all across the world - Timothy was able to turn the table. The seizures had come under control very late that first night. There was a battle with his blood pressure, involving a lot of medication, but he was holding on.
Darran and I still had to have the unbelievably difficult conversation about what we would do if they said there was no hope, or the brain damage was too severe. It was like slicing myself open, but we had to do it. We didn't want to be unprepared and unable to make the call. All we wanted was to be able to give him the best quality of life possible, and we felt that included being able to make the big decisions if it came to that.
But Timothy wasn't done - he was determined. He was rewarmed over a 12 hour period, after the 72 hours in the hypothermic state were over. Slowly but surely medications were decreased and withdrawn. They were able to introduce feeding via his NG tube. Darran was able to hold his hand on Father's Day, not like we planned, and he was unable to be taken out because of the ventilator, but they were together.
Whilst still ventilated, on Day 4 (Day 5 if you're a hospital professional and count the day of birth as Day 1, rather than Day 0 like it was when Christopher was born), Timothy opened his eyes for the first time since his collapse. His nurse hold me that he'd been keeping his eye on him all morning, but might play games with me and refuse to show me this skill. I cannot put in words what it meant when his eyelids slowly opened and he looked at me. There was even talk of beginning to remove the ventilator in the next day or so, as he wasn't needing it for breathing support any longer.
On Day 5 (Day 6), there wasn't even a discussion about when they would make the decision to remove the ventilator. Timothy, ever in charge, decided he was done with this tube lark and tried to extubate himself. Now that I am good friends with his Mum, I'm convinced the baby opposite him was sending Timothy the skills, as George spent our entire Neonatal stay having his opinions about pulling his tube out on a regular basis. Those babies really do seem to have special communication skills - you don't notice during the day time, but very late at night when the unit is quiet, they set their alarms off one after the other, as if they're having a merry chit chat.
With the ventilator removed, the last of the truly scary pieces of equipment, and that he was rewarmed and responsive, he was able to have another EEG study to check his brain functionality and look for any further seizure activity. That afternoon, on June 17, we were finally able to take Christopher up to NICU to meet his baby brother for the very first time. Watching him reach through the little doors to hold his brother's hand for the first time melted my broken heart. He has been an incredible big brother from that very second.
On June 12, 2019 we welcomed our second son Timothy into the world, by planned caesarean at 39 weeks. The start was promising, he was alert and curious and vocal, weighing in at a solid 8lb 3oz.
My pregnancy had been uncomplicated, despite flying to Australia and New Zealand around 25 weeks for a fortnight, suffering unbearable and persistent Braxton Hicks from 21 weeks, awful itching of the soles of my feet and palms of my hands, and two occurrences of "elephant foot" which earned me lots of poking and prodding, hours on the hard seats of A&E and MAU, two scans for thromboses, and shots of Clexane. Mental health is another post all of its own.
After experiencing a very non-vocal baby when our first son Christopher was born by emergency caesarean, it was quite the shock to hear this little guy expressing himself. Whilst adjusting to the bizarre reality that I had just had another baby, and it was indeed a boy as I had predicted at 12 weeks when on ultrasound the baby looked identical to his brother at the same gestation, I came to an uncomfortable realisation. I could move my right foot. And I could feel. Little insight: it is not pleasant to be able to feel yourself being reattached after major surgery. Mercifully, local anaesthetic meant I could get through the last lot of stitches. Darran, Rebecca our midwife, and Timothy exited theatre for recovery.
It had been a much more stressful delivery for me than my emergency caesarean, and I knew I'd lost more blood because they had me change onto a new bed with clean linens which hadn't happened last time. But it was over, my last pregnancy was finished, baby was here safely, and I was a Mama to two boys.
Back in recovery, we attempted to get him latched to start feeding and he continued his loud cries. I felt frustrated not getting the latch instantaneously - I prided myself on being an extended breastfeeder and his big brother had only finished his feeding journey the night before after 37.5 months. I persevered, and felt like I was finally making progress enough to call my Mum in Australia with the news. Our midwife went to theatre for the delivery of the next baby. Darran was speaking with his parents, and as my call finished, sent a text to our NCT friend who was looking after Christopher to pass along that it had been a boy.
As I hung up, Darran suddenly said, "has he fallen asleep? He's very still..."
Not wanting to break the latch I had tried so hard to get, I placed my fingers on his intercostals - an instinctive response as a singer to check for calmness of inhalation. I couldn't feel anything. I shifted his little body slightly away from my chest, and placed my fingers on his own chest. There was no rise and fall. I could barely feel his heart. I lifted his face away from the breast, and his frozen expression will stay with me until the very end. His skin had become a mottled grey/brown.
"Do we need help?"
I can't remember if I spoke a reply or just nodded. I can't remember if I ever said that I couldn't feel him breathing. All I can remember is this crushing weight descending upon me, and blind fear.
Darran went straight for the recovery nurse outside my curtains and said we needed help.
She followed him in, took one look, and before we could inhale again, she grabbed him and ran.
The alarms blared.
The most primal cry escaped me.
I couldn't stop.
He was gone. My baby was dead.
All I could see were the blue curtains. Darran had seen her leave the room, with our newborn baby floppy in her arms.
I found out two days later that the Labour Ward Matron had been the first to respond to the call. She had begun resuscitation whilst the NICU doctors dropped and ran from across the hall. When she reached him, she told us, he was completely white.
I was frozen. Sat bolt upright despite having just had major abdominal surgery. I remember while I was crying having this moment where I felt incredibly guilty for the couple in the bay next to us who had just returned from the delivery of their baby and had to listen to me. Guilty that I was ruining their first moments.
The staff at King's College Hospital administered aggressive resuscitation, and they were able to bring him back. It had taken 2 minutes to restore his breathing, but over 20 minutes before his heart rate would remain above 100 BPM.
With blood gases confirming that he had been deprived of oxygen, and in both kidney and liver failure, Timothy was moved into a transport incubator and rushed across the hall into the NICU. Darran was sent with him, and the Anthony Nolan nurse on shift was sent to sit with me so I wouldn't be alone. I have no idea how long she was there, or for how long Darran was gone.
At the moment that those alarms started, any semblance of time had broken.
Each time I checked my phone that day, I had no clue what the hours really meant or how time was passing. I have significant gaps of time, just the next period of memory where people had re-entered my physical space.
The Neonatal consultant, Carolina, and her Registrar, Becky, returned to update me. Because he had suffered hypoxic ischaemia (oxygen deprivation), they had taken the decision to place him into a hypothermic state for the next 72 hours in order to give his brain the best chance of recovery and in the hope of avoiding further brain injury. He was on a ventilator. There were no guarantees, only steps they could take in the hope for the best.
I remember they said they were doing everything they could, and that they would be back when they could. More time was passing. I was well and truly in control of my legs, which had honestly happened quickly after that foot woke up during the surgery anyway, and the decision was made to move me from Recovery to Transitional Care in readiness for discharge to Postnatal.
I was in agony. I couldn't feel my physical pain and was still sat at a 90 degree angle, but my whole body felt like it was being ripped apart from every single fibre in every single direction. I know I talked to my friend Claire, I remember she said she would be praying.
In TC, Becky the Registrar came back to see me, along with the anaesthetic nurse from theatre. Becky did not come with good news. Shortly after Timothy's arrival into ICU he began having multiple and repeated seizures which they were struggling to control. The nurse said the whole surgical staff were in shock. Nobody knew what the hell had happened, how it had gone so wrong.
I was transferred to Postnatal, my arms empty and my face haggard. They put me in a private room on the Antenatal side of the ward, entering through the back doors, so to speak, to protect me from being wheeled through the entire Postnatal ward, resplendent with mothers and brand new babies.
Around 6pm, Darran went back to the NICU for an update before he had to collect Christopher and leave me for the night. They had asked us to stay away for the initial hours until he was settled and stabilised. He returned, having spoken to the evening consultant, Theo. Timothy was still suffering seizures and they were still uncontrolled. A third drug was being added in the hope it would be the saviour. If the seizures continued like they were, the outcome was bleak.
Darran had to go, and I was alone. A health care assistant came by as he was leaving, and when she heard baby was upstairs, she insisted I wasn't to wait for a midwife to become available so I could be taken up in a wheelchair: she was going to take me herself, and straight away. I wish I could remember her name - she came back to see me a few days later, and then a third time, and I could barely remember her face as it was.
We were buzzed into the Neonatal Ward, doors I would come to know so well, and there was a shift in the air. I scrubbed in at the wash trough, feeling a strange blend of emotion. You see, I'd done this before with Christopher. He was admitted into NICU at 8 hours old, with breathing difficulties, and was away from me for three days. I knew how this unit worked, on the surface at least, and I knew exactly how it looked.
Timothy was even in the same room, ICU2, and on the same side, only he'd picked up the window space whereas his brother had been in the middle.
I can't tell you a lot about that visit. I tried to get what pictures I could, the little hands and feet. I attempted to take in my baby, but it was impossible to escape the wires and tubes.
He was laid on a cooling mat, and wrapped in a cooling vest, attached to the Criticool machine which was keeping his body temperature at 33 degrees; hypothermic. His head was hidden within a little hat, tied across the ventilator tube into his mouth. There was a wire into his forehead vein, cannula lines into his hand and foot, lots of needle marks on his poor little hands, and a nasal gastric tube in place. I later found he had lines through his navel as well. He was really puffy and swollen, and I felt so foreign to him and him to me.
I could only sit and place my finger into his little palm, and hope he knew I was there.
That first night, hoping beyond hope that his seizures would stop and he would keep fighting were excruciating. I barely slept, expressing colostrum by hand around the clock... and watching my phone, terrified it would ring with news or that a midwife would come to get me.
I cannot express the relief that the call, or a hand on my shoulder, never came, and that when I could get taken up in the wheelchair the next morning, he was still fighting.
Incredibly, with the efforts of the NICU staff - and I like to think a hell of a lot of positive thoughts and prayers from all across the world - Timothy was able to turn the table. The seizures had come under control very late that first night. There was a battle with his blood pressure, involving a lot of medication, but he was holding on.
Darran and I still had to have the unbelievably difficult conversation about what we would do if they said there was no hope, or the brain damage was too severe. It was like slicing myself open, but we had to do it. We didn't want to be unprepared and unable to make the call. All we wanted was to be able to give him the best quality of life possible, and we felt that included being able to make the big decisions if it came to that.
But Timothy wasn't done - he was determined. He was rewarmed over a 12 hour period, after the 72 hours in the hypothermic state were over. Slowly but surely medications were decreased and withdrawn. They were able to introduce feeding via his NG tube. Darran was able to hold his hand on Father's Day, not like we planned, and he was unable to be taken out because of the ventilator, but they were together.
Whilst still ventilated, on Day 4 (Day 5 if you're a hospital professional and count the day of birth as Day 1, rather than Day 0 like it was when Christopher was born), Timothy opened his eyes for the first time since his collapse. His nurse hold me that he'd been keeping his eye on him all morning, but might play games with me and refuse to show me this skill. I cannot put in words what it meant when his eyelids slowly opened and he looked at me. There was even talk of beginning to remove the ventilator in the next day or so, as he wasn't needing it for breathing support any longer.
On Day 5 (Day 6), there wasn't even a discussion about when they would make the decision to remove the ventilator. Timothy, ever in charge, decided he was done with this tube lark and tried to extubate himself. Now that I am good friends with his Mum, I'm convinced the baby opposite him was sending Timothy the skills, as George spent our entire Neonatal stay having his opinions about pulling his tube out on a regular basis. Those babies really do seem to have special communication skills - you don't notice during the day time, but very late at night when the unit is quiet, they set their alarms off one after the other, as if they're having a merry chit chat.
With the ventilator removed, the last of the truly scary pieces of equipment, and that he was rewarmed and responsive, he was able to have another EEG study to check his brain functionality and look for any further seizure activity. That afternoon, on June 17, we were finally able to take Christopher up to NICU to meet his baby brother for the very first time. Watching him reach through the little doors to hold his brother's hand for the first time melted my broken heart. He has been an incredible big brother from that very second.
Our story doesn't end here - this is only Part 1.
Our ICU stay was not over, and our Neonatal stay as a whole extended much longer than anyone expected.
But this is not an easy journey to tell. This is just the beginning.
Telling you about it is as much to detail how far Timothy has come in the last 12 months, as much as to potentially find our missing answers, help explain what life is like for undiagnosed children, and be a way for me to work through my traumas and PTSD.
Thank you for reading, if you've made it this far.
If you've been with us since the very beginning, when I first ventured onto Insta stories and began to detail Timothy's journey, thank you for your support and your thoughts.
We would be here now, but we wouldn't be here in the warmth of the love we have experienced from far and wide. Timothy is a very lucky boy to have had so many people thinking and hoping for him.
We are eternally grateful. I am eternally grateful.
And I am proud of our miracle boy, who just never gives up.
Our ICU stay was not over, and our Neonatal stay as a whole extended much longer than anyone expected.
But this is not an easy journey to tell. This is just the beginning.
Telling you about it is as much to detail how far Timothy has come in the last 12 months, as much as to potentially find our missing answers, help explain what life is like for undiagnosed children, and be a way for me to work through my traumas and PTSD.
Thank you for reading, if you've made it this far.
If you've been with us since the very beginning, when I first ventured onto Insta stories and began to detail Timothy's journey, thank you for your support and your thoughts.
We would be here now, but we wouldn't be here in the warmth of the love we have experienced from far and wide. Timothy is a very lucky boy to have had so many people thinking and hoping for him.
We are eternally grateful. I am eternally grateful.
And I am proud of our miracle boy, who just never gives up.
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