A mothers story…My miracle….Rishaans story and the fight for his life….

I never thought beyond my wildest dreams that the wonderful news of childbirth would become a three-week world of trauma for me. However it happened and I lived through it and came out the other side with a completely different mindset toward life altogether.

I have been tentively skirting around the idea of sharing my story and not knowing whether its an experience I wished to share with the world. Such a personal harrowing time was something I wanted to keep locked inside.
However, something had to give. I needed to let out the agony of what I went through during those three weeks and writing for my blog seemed the best way to get through this catharsis.
So here’s my story. Probably no different or no worse than many other mothers out there. But a fact of life that is going to torment my heart and soul for many years to come because no matter how hard people tell me to forget it, I simply cant…and simply wont..

11 March 2014

A routine appointment and visit to check my blood pressure at 36 weeks plus one day at the hospital turned into a day of hell. Arriving at the hospital at 8.30am after having had an unpleasant night of vomiting and feeling generally unwell, I proceeded to have my baby’s heart monitored, as was the case that I had been having on a weekly basis for the past few weeks. I was tired. I had been working to the last minute and I welcomed the thought of just sitting back in their comfy chairs and be looked after for a while before going in to work. I wasn’t remotely prepared for what was about to unfold.

At precisely 8.55am I was informed that the nurse was unable to obtain a good heart trace for my baby who was starting to get quite a bit distressed within the confines of my womb. The heart rate had slowed down considerably and within seconds of being told this, a consultant was introduced to me, who patiently informed me that I was about to be wheeled into theatre for an emergency c-section. From that moment on, the world started to spin before my eyes and what followed felt like fragments of a bad dream.

Everything needed to be done with utmost urgency and I was thrown into a wheelchair and wheeled straight to theatre where my clothes were stripped off and a gown was draped over me. The first thing that crossed my mind at that moment in time was, “ it wasn’t supposed to be like this. I hadn’t planned my labour like this. Not so soon. He’s not due yet. Where’s my mum and where’s my husband?”. I had forgotten after all, that life never follows a set plan and this was going to be proven to me in a nasty way.

At 9.54am Rishaan Atin Kathuria was born, but where was that cry that every mother looks forward to hear? Where was that moment where the mother gets the chance to bond with her baby as her little gem is supposed to be placed in her arms? No such luck for me. I didn’t realize at that moment but it was going to be a good fortnight before I was going to be able to hold my darling in my arms.

At that moment things began to blur as long medical terminologies were being thrown around me, words that I couldn’t understand or had never heard. I was so confused and nerve wracked at that point and in intense pain; everything just felt like a personal hell for me.

At that precise moment, minutes after Rishaan was born, I turned my head and saw my mother by my side. There was a temporary moment of relief for me as at that point, I realized that I wasn’t alone. It was later I discovered during debriefings at the hospital, that my poor boy was fighting for his life as they wheeled him away. I managed to get a brief glance of his body as the crash team came to the rescue and proceeded to resuscitate him and bring him back to life. According to the report, Rishaan produced occasional gasps of breath but no sustained respiratory effort was made until 7 minutes into his life. Cardiac compressions were started and the heart rate was less than 100. They were unable to obtain adequate cardiac output so 30 seconds of cardiac compressions commenced with ventilation breaths. Eventually he was taken to the SCBU (special care baby unit) with the CPAP on 100% oxygen due to low sats.

My husband arrived at that time and was torn between dealing with my unfortunate state and Rishaan battling for his life. I remember telling him in a daze “go see Rishaan…see if he is ok. I will be fine!” and watching the distress and confusion in his eyes. He was already being pulled into two ways and I saw the pain in his eyes, as he had to leave me to be dealt with and stitched up, to go and deal with his son.

The result of my unfortunate condition was reported in the discharge report as “True knot in the cord” which had put baby into distress and as a result, he had been deprived of oxygen before he came forth into the world. The implications of this hampered in my mind during my stay at the hospital whilst recovering from my C-section. There was only one question that was going on in my mind “is he going to make it? Will he pull through?” and I hadn’t even had the chance to see him yet!

My stay in the hospital was for four days and I wouldn’t have wanted to stay a minute longer than that. I literally had to force the team to discharge me so as to ensure that I could look after my baby who was about to embark on a 3-week stay in hospital.

At around midday on 11 March, it was carefully explained to me that Rishaan had been born in very poor conditions. He hadn’t been breathing on his own and he had been deprived of oxygen within the womb for some time. The decision was immediately made at that time that he was to be transferred to Queen Charlotte’s Hospital for intensive care and to undergo a specialist method of “cooling” where his entire body was to be exposed to low temperatures and his brain cells were going to be cooled in order for brain damage to be avoided. This method was only available at this hospital and was going to last for 72 hours. The outcome would not be known until the treatment was completed. It was all touch and go and while I was hemorrhaging and being given units of blood, my husband was taken in a blue light ambulance to Queen Charlottes with my unconscious and barely breathing baby.

Here is a link to the treatment explained in detail
http://www.imperial.nhs.uk/aboutus/news/news_021684

The method of cooling is only given to babies who are born after 36 weeks so he was lucky to have been able to receive this treatment. Furthermore, cooling is only affective if the baby is started on the treatment within the 6 hour window, hence the ambulance rushing him to the source of treatment with urgency. I was stuck at West Middx Hospital and had to wait three days before I was able to see my baby. When I did get the opportunity to see him, the shock of seeing him amongst all the machines rocked me to the core. It was like a huge fist had punched the life out of me. The tears were uncontrollable.

having the cooling treatment
having the cooling treatment

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Once the cooling was over after the 72-hour period he was warmed as his temperature was raised slowly over 12 hours to the normal body temperature. Rishaan should have started improving after this and he did respond well to the cooling treatment, however, unfortunately the painful journey for him wasn’t over as he developed a very serious infection. His CRP (C reactive protein) level was 229 which is the highest level to indicate an infection. He developed septiciaemia and he also suffered from brain seizures.

measuring his brain activities
measuring his brain activities

By this point he had also had blood transfusion – this consisted of packed red cell transfusions and platelet transfusions as his platelet count was incredibly low due to the infection.

As a result of the cooling treatment Rishaan also suffered with his back being burned and bruised and developed fatty tissue lumps called necrosis, which were so painful for him if anyone touched him. This affects only one in hundred babies who have the treatment so my poor baby was unlucky in this respect too.

the burn and bruising on his back
the burn and bruising on his back

On Saturday 15 march, all hell was about to break loose. Rishaan’s health totally deteriorated. I still remember the phone call from my husband from the hospital telling me to get there as soon as possible as the consultant had informed him that Rishaan was critical and there was the chance that he wouldn’t make it. I can still hear those words reverberating in my mind and I recall how I ran to have a bath, get dressed and get to the hospital while my stitches reminded me that I too was in incredible pain from my c section only a few days back. My pain however was nothing compared to what my son was going through.

Upon reaching the hospital I watched as my sons condition worsened. The doctors just couldn’t find the infection’s source and didn’t understand which antibiotic to use to battle it. They started to pump him with many different antibiotics in hope that at least one of them would work its magic. But the prognosis was grim. He was sinking and we were contemplating the thought that we could lose him.

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I had left my 13 year old boy at home crying his eyes and heart out at the prospect of losing his baby brother while I sat with my other son holding his hand and ordering him to get better. Being torn between the two was heartbreaking to say the least.

That afternoon Atin and I were sitting alone in the cafeteria of the hospital, which had become our second home almost, and cried in each others arms as we tried to come to term with the fact that we may lose our precious baby. Everything seemed so grim. I don’t think we ever felt so alone and deflated in our life as we did on that day. I don’t think I have shed as many tears as I did on that day. And that’s when our faith and belief in God came to our rescue and we left everything in the Lords hands. We didn’t feel we could do anything more other than have hope and pray for a miracle for our son to survive and get better. And our belief did just that. It pulled us through. It pulled our child through.

Rizul was given special permission the following day to come in to see Rishaan in case he didn’t get a chance should anything happen to him. I must say I was incredibly proud of my older son who dealt with this meeting with such bravery and responsibility. He held his baby brothers hand and willed him to get better. It just broke my heart to watch Rizul see his baby brother in this state, so ill, helpless and so vulnerable, surrounded by all the machines and medication being pumped into his tiny body. At that moment Rizul told me “mum, he is going to be absolutely fine” and strangely enough, I found myself believing him.

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So we all prayed. Each and every one of us in the entire family. We prayed day and night and our friends and families all prayed and we put so much faith in our beliefs. And guess what? IT WORKED!!

Rishaan started to respond and slowly but surely he turned a corner. From Monday 17 March onwards, Rishaan started to respond to medications and respond to the treatments and he started to get better. He was fighting and he was staying strong – who would have thought such a small being would have such strength and powers to retain his health and stay so determined to stay with us. But he did. He was and still is my little tiger (a nickname adopted by one of my fellow work colleagues which has stuck to date!)

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After that corner was turned, it was simply a slow progress over the space of 2 weeks where Rishaan fought hard and where we watched in surprise how a small bundle of joy battled with determination to get into good shape.

It was a total of 3 weeks before Rishaan was discharged and was able to come home. The hardest thing for me during this experience was having to leave my baby at night at hospital with the nursing staff to go home but the following mornings, both Atin and I would hurry up, get dressed and get back to Rishaan at hospital to sit by his side and will him to get better. Our life had developed a routine of dropping my son at school and then heading to Queen Charlottes until evening. I also found it incredibly hard not to be able to hold him in my arms. It wasn’t until the second week in hospital when both Atin and I were able to hold him. The feeling of holding him for the first time in my arms is something I am not going to forget for years to come. Albeit he was attached with the machines and the wires got in my way, I still felt my heart melt when I held him in my arms. Changing his nappy for the first time was a challenge as I struggled with all the wires attached to his legs and tummy whilst at the same time, trying to make sure I wouldn’t hurt him in any way.

first cuddle after 2 weeks
first cuddle after 2 weeks

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These challenges were minor however and shadowed in comparison with the intense pain I felt whenever I watched my little tiger undergo surgical interventions. Each needle that stabbed him, each blood test he had all left an indelible mark in my mind. I remember each tear I shed as I watched Rishaan suffer the pain of the surgical interventions and it broke my heart as I saw each part of his body attached to wires and pricked with needles. Starting from his head, three long needles were embedded in his tiny brain to measure his brain activity. He had a drip in his little arm, which he at times pulled out and had to have reinserted again and again. This carried his fluids and bloods along with medications into his blood stream. He had a long line needle in his leg, which had to be taken out due to infection and then had to be inserted again. He had little pads wired up to him to check his SATS, his blood pressure, his respiratory activities, lines going into his umbilical cord, catheters and a line going into his genitals and a tube feeding him milk through his nose or mouth. His mouth was inserted with the ventilator, which allowed him to breath.

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He was constantly prodded and poked daily for blood test, his heel was pricked several times during the day to check for his diabetes and sugar, which had become a problem and eventually there was no space left on his tiny feet to take any blood from. In fact there was no space left on the backs of his hands when blood had to be taken out for bloods test.
The most painful procedure that he had was a lumbar puncture where a needle was placed in his spine to withdraw liquid from his spine to ensure he did not have a meningal brain infection. This was done when his back was severely bruised so the pain he may have endured is only something he would have known. Another day where both Atin and I cried our hearts out. These were followed by ongoing tests to monitor his various bodily activities which included a brain MRI and heart scans along with basic vision and hearing tests. Each procedure had both Atin and I with lumps in our throats.

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However on Thurs 3 April 2014, three long and painful weeks later, we were able to bring our darling boy home. And that was one of most blissful days of our lives. One by one all the needles were taken out of his body and all the medications were weaned off slowly over the three weeks. One by one each antibiotic was removed. One by one each wire was removed and eventually, last of all, his feeding tube was removed from his mouth. Rishaan was finally free from all the restrictions which had been supporting his life, and he was finally coming home as a normal healthy baby boy. That was Rishaans second life and he came home on the due date that was supposed to be the day he would have been born.

Over the three weeks, Rishaan suffered the following list of medical complications:

• Persistent pulmonary hypertension
• Meconium aspiration syndrome
• Hypotension
• Vomiting with feed intolerance
• HIE grade 2 – moderate neonatal encephalopathy
• Seizures
• Thrombocytopenia (reduced platelets in blood)
• Disseminated intravascular coagulation
• Fat necrosis on back
• Sepsis and septicemia
• Infection of umbilical catheter
• Hypoglycemia

The tests that Rishaan had done during his stay were as follows:

• Cerebral function monitoring
• Cranial ultra sound
• Echocardiogram
• Electrocardiogram (ECG)
• Endotracheal intubations
• Long ling in leg
• Mechanical ventilation
• MRI head scan
• Nasogastric tube insertion
• Orogastric tube insertion
• Therapeutic hypothermia (cooling treatment)
• Umbilical arterial catheter
• Umbilical catheter

Drugs that Rishaan had during his hospitalization and treatment:

• Dopamine
• Doputamine
• Morphine
• Milrinone
• Paracetamol
• Maxijul feeds
• Insulin
• Benzylpenicillin
• Gentamicin
• Vancomycin
• Pancuronium
• Intravenous glucose
• Meropenem

THE END

Life has thrown many obstacles my way and I have faced them all with determination and great inner strength as should be the case. But nothing on this earth prepared my husband or me for what we had to endure over the three weeks of Rishaan’s hospital admission. The pain we felt was immense and cannot be described. Most days we both felt that someone had punched a hole in our chest and pulled our hearts out. We felt alone, scared and so uncertain for our child. Each day threw us new challenges as Rishaan would get better on one day and then worsen the next. It was an emotional roller coaster throughout. Sleep was a thing of the past. We forgot what a good meal consisted of. The hospital had become our haven and it was pure torture having to leave our baby at the hospital each night to come home to look after our older son. It was pure hell not being able to hold our child in our arms as soon as he was born. Having to wait to do all the tasks that most parents take for granted was a gift for us each time we were able to do them. Simple things like feeding him, changing his nappy were small perks, which we indulged in with smiles. Our lives were dominated by numbers throughout. Blood pressure levels, test resuls, numbers on his SATS, numbers of his glucose levels, numbers of his charts and readings etc. It was all about getting the right numbers for him to get better. It was a nightmare to say the least.

Throughout this traumatic time, we have had so many friends and family members supporting us and praying wholeheartedly for our child. Friends from work, friends from social circles and families across the globe all put in their faith and it is my belief that these prayers played an important part in getting Rishaan back into our lives. That combined by his own strength. Rishaan is truly a miracle baby and a testament in our lives that faith is truly an incredible support in our lives. He fought through it all, smiled his way through hard-hitting tests and was determined to come home with us to enhance our lives with his baby cries and smiles.

bonding time with mummy before coming home
bonding time with mummy before coming home

I didn’t believe too much in miracles however, this event has made me believe otherwise. Rishaan is every bit my miracle baby and when there was a reason to think he may not make it, a miracle proved otherwise. There is nothing worse in this world than the feeling of a parent losing their child. We were so close so we were taken to the brink of hell but were fortunate enough to be brought back safely.

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I’m now enjoying being a mother of my beautiful baby who has defied everything and is now every bit a normal baby in spite of the traumatic conditions of his birth.

My parents have been an incredible source of support throughout this experience right from the time my mother stayed with me every minute at the hospital to the times by father drove me back and forth to the hospital. Only a parent can do this and I am incredibly lucky to have had them both with me by my side through this traumatic time. My son has been a source of strength throughout and he always believed in positivity. He refused to believe that Rishaan may not make it through. He was every bit the tough guy in all this. They held my hands, the hugged me with love and they supported me each and every day and ensured that I would not become a victim of a nervous breakdown. My mother in law has been a huge source of support as she instantly made her way from India to my home to help me and family through this tough time. And the staff at Queen Charlottes Hospital have been absolutely fantastic with their dedication, from the nurses to all the doctors, students and consultants. Their input in the entire matter was invaluable.

Most of all the pillar of my strength has been my husband who has been devoted to both Rishaan and I throughout it all. Atin was with Rishaan from day one and held his tiny hands from the word go. He would speak to him and will him on to live and fight at all times. He refused to give up on him and loved him unconditionally throughout. He cried, his heart bled and his life was a standstill but he continued to stay committed and determined with his son. I couldn’t be more proud to have a husband with such devotion and hence I decided to keep the name of my son Rishaan Atin Kathuria, after his father who contributed a great deal to getting him better. Rishaan is truly daddys boy as the bond that developed between the two boys during this time is one that cannot be replicated. Thank you Atin for all your love and support always.

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10 Comments

  1. Sangeeta
    Thank you for sharing this. Now I have stopped crying I can say you are one of the most amazing women I have ever known. I am so relieved everything is ok now. You are so blessed to have such a supportive family.
    Love Jane xxxx

    Like

  2. Hi Sangeeta
    Thank you for sharing. You are truly blessed. Miracles do happen your prayers were answered. We are all happy that your baby is well.
    Lots of love to all of you
    Gail and warren

    Like

  3. My God, what a post. Reading this moved me hugely this morning, Thank you for sharing such a personal experience, we hear so many horror stories about the NHS getting things wrong and hospitals, I’m so glad they were there for your baby boy and that he pulled through and that he’s now back home with you and his family, where he belongs xx

    Like

    1. Thanks alot yasmin. yes the NHS were fab this time around. they couldnt have done a better job and its due to their help and support that we were able to bring our baby home. xx

      Like

  4. Sangeeta, such a moving account of your family’s very traumatic experience. Rishaan is a true miracle. Looking forward to meeting him x

    Like

  5. I knew this was going to be a moving account and needed to find a still peaceful moment to read it. Indeed it was as I thought an amazing story. I remember the moment I heard about Rishaan’s birth. I am so grateful all our prayers for this little man to pull through were answered. It has strengthened my faith
    and the courage of this little man Rishaan your Tiger, your husband , Rizul and especially you has been an example to us all. Sangeeta you continue to be a very special person to me and I feel incredibly privileged and humbled to share this very special story.
    God bless you and all your family.
    Jacqueline Xxx

    Like

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