About Adam

My son, Adam, was born in 2011 after a normal pregnancy.  But the morning after his birth, he was grunting, wouldn't feed and was crying constantly. After a lengthy period of careful observation by the hospital staff, I was told that Adam needed to be "taken away for some tests."  I had no idea where he was being taken and only much later discovered it was to neonatal intensive care.

Adam lying on my chest before anyone realized how ill he was

In the interim, I suffered an incredibly rare complication of birth called a Pelvic Split, meaning all of the bones in my pelvis had separated from one another.  I was left unable to walk and in agonising pain.  Having left the hospital no more than an hour earlier, I rang my husband, Chris, begging him to return.  Chris describes this period as the beginning of the darkest hours of his life.

Chris discovered that Adam's entire body had shut down, he had stopped breathing, was having constant seizures.   His first sight of Adam was of a team of doctors desperately trying to save his life - Adam's body was blue and an oxygen bubble covered his face as his body shook with seizures.  Eventually, Adam was stabilised, put onto life support and placed in an induced coma.  His body was swollen and bright yellow with jaundice.

As he explained what little he knew, Chris and I sat holding hands and cried together as we waited for news. Twenty-four hours later, the doctors were able to give us their suspected diagnosis of Group B Strep with Meningitis, confirmation of which was received following a lumbar puncture the following day. 


By sheer determination, Chris and a midwife managed to get me into a wheelchair so I could visit Adam.  
I will never forget looking into that incubator for the first time.  Horror and grief doesn't even begin to cover that moment. We were allowed to gently stroke one of Adam's legs but he was simply too fragile for any more contact than this.  Nurse Sarah allowed us to take a photo of Adam, without flash for fear of triggering more seizures, and at the time we feared this was the only photo we would ever have of our son:


Intensive Care, in a medically induced coma

On Monday, the doctor gave me a leaflet for the Group B Strep Support Charity explaining the infection.  The words blurred before my tear filled eyes as I saw that while many children recover from this infection, some die or are left permanently disabled.  Over the next six days, we could do nothing but watch and wait as Adam fought for his life.  I sat beside my son's incubator and prayed, desperately with few words and no eloquence, begging God to help my son.  The dedicated medical staff treated him night and day and however bleak the situation looked, refused to give up.  

Slowly, Adam's breathing began to strengthen and a few days later, doctors were able to remove his ventilator. Then one day, Chris rushed to my room excitedly telling me Adam's eyes were open. He showed me this photo he had taken and it remains one of our favourites:




Adam opens his eyes for the first time

In tiny, baby steps, Adam began to grow stronger. His seizures reduced and then stopped. His first MRI came back with some small spots of brightness which appeared to indicate brain damage, but it was too early to tell.  Remaining an inpatient myself, I spent up to twelve hours a day sitting in a rocking chair in NICU as Adam slept in my arms.   As Adam moved from intravenous feeding solution, to a nasal feeding tube, we were encouraged to give him a dummy to teach him how to suck.   Until then, his entire experience of eating had been, "I'm hungry!.....I'm full" as milk was essentially poured into his stomach through his feeding tube.  He had no comprehension of eating.

My precious Gnomio learning to eat!

Finally, after twenty-three long days and against all the odds, our little miracle was strong enough to be discharged from hospital.  Over the last three years, it has slowly become clear that GBS Meningitis has left Adam hearing and visually impaired, autistic and globally developmentally delayed.  Adam has absolutely no sense of danger or personal risk and safety - we must function as his eyes and ears and constantly be vigilant to keep him safe.  Because of his many complex and intermingling disabilities, Adam remains under the care of five Consultants, four therapists and attends a Special Needs School.  We use Makaton sign language and PECS cards to attempt to help Adam communicate but the level of care he requires is immense and ongoing.  

We still do not know what the future holds but we are absolutely in love with our little miracle and devoted to his care. I am a strong advocate of the Group B Strep Support Charity and would ask anyone reading this to also read the section on GBS to learn what the infection is and how easily it can be prevented.

Our journey continues.

My beautiful boy at a year old



4 comments:

  1. I've just found your blog and i'm so sorry for everything you went through but also so pleased Adam (& your) are recovering and improving daily! Beautiful family :)

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  2. That's very kind, thank you. :-)

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  3. Wow that a great story, I can relate so much, my son Jake was born around the same time as Adam, 31/03/11 in Dubai, also with GBS pneumonia and sepsis, what an awful time it was, i also spent mothers day that year in NICU, he is fine now, we had a very rocky first six weeks which i think of at least once a day but we are so grateful for a positive outcome, i hope you are feeling better also, Audrey

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  4. Hi Audrey, I am so glad your son survived and has had a positive outcome. I do sincerely hope this continues for you both. Thank you for your kind words.

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