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Sarah Battles on - An Update

Discussion in 'Parents of Children with Type 1' started by SarahsMum, Jun 29, 2011.

  1. SarahsMum

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    Firstly my Apologies for not updating in here for so long. Life has been pretty hectic and Ive also returned to work Full-time and gone through a Marriage breakdown.

    For those that dont know Sarah. Sarah was born in November 2008 - 9 weeks early and was diagnosed with Neonatal Diabetes within hours of her birth. She had some very major complications, one being her birth weight was just over 700 grams, but her internal organs were a mirror image of what they should have been. At 3 weeks we were told of her diagnosis. Sarah was born with a very rare condition in which her pancreas had failed to develop.

    The last month has seen Sarah face some challenges with her health, but she battles on, her smile and laughter has returned and for that I am very grateful.

    Its times like this that I remember back to the period right before she made her surprise arrival. There were alot of people worried about this baby that I was carrying. She wasnt growing, I had a hindwater leak, fluid levels were dropping and I was in premature labour. I remember this time clearly, its like it was only yesterday. There I sat in a delivery room, being pumped full of drugs to stop the contractions. The Nursery was on standby. The Aneathesist had come to see me at 10pm to go over what would happen if this baby was born tonight. Her estimated weight was 525 grams.

    We made it through that night, I spent another 3 days in hospital and come home on Bedrest. I was worried, really worried.

    Then she arrived. At the time all I could see was a beautiful little girl, I didnt see the breathing tubes, the translucent white skin, the multiple lines, the machines keeping her alive. Even when they told me her stomach was severly distended I couldnt see that either. I just saw my baby, a baby born before her time.

    I see it better now. She was tiny. She was born without a heartbeat. She wasnt breathing. She was so anaemic she required a blood transfusion within an hour of her birth. She was critically ill.

    It feels like so long ago that we had "that" meeting. The meeting when we were told she had Pancreatic Agenesis. I remeber sitting there saying. "So she will be a diabetic" I had no idea the pancreas was such an important organ.

    I also dont think I realised how fragile her health would be that first year at home. Sarah caught everything.

    When her Dr's told me that a simple cough or cold would present a major danger to her, I thought "pfft" its just a cold. But my god how wrong was I. A simple cold would send her blood sugars haywire, she would be in respitory distress within hours and in the emergency department Resus bay. At one stage the Drs were tossing up putting her on CPAP in ICU.

    We made it through 19 seperate admissions that first year. Each time I held my breath hoping her body wouldnt give up. Sarah is tough, I know she is tough, she defyed the odds through her early start, but in the back of my mind there is always that niggling thought, she can have all the fighting spirit in the world, but what if her organs have just had enough, what if this is that one infection she cant fight.

    Recently the Type 1 community has lost some of its own. Succumb to the very disease that people see as ok as long as you take your insulin.

    Many people see Insulin as a cure. It keeps our children alive, but its only a bandaid. It covers the wound but does not heal it.

    Insulin is a very dangerous drug, to little and your in DKA, to much and you can be in a coma. Its a fine balance. Its also one almost 3 years later that we for the majority of the time have not found.

    Its not our fault, its not the Drs fault, we are doing everything by the book, its just that Sarah cant read yet, so she isnt following the book! She is travelling her own path.

    For Sarah though, she is following the path of those "born without a pancreas". Its noted alot in literature that there BGL's are brittle and hard to control. There growth is delayed, they have issues with Multiple organs.

    As it stands Unfortuently for Sarah she faces issues on 2 fronts. the first and foremost is her condition "Pancreatic Agenesis" and while Diabetes is the first thing that comes to everyone's mind when you think of a person not having a Pancreas, the tiny miniscule organ does so much more than produce Insulin, <span class=" fbUnderline">but its the added on issues of when a pancreas doesnt grow, it takes out an entire structure that should have grown with it.</span>

    Sarah also is facing some complications of Prematurity. So while she had the added benifit of growing past the magical 30 week mark, she didnt have the benifit if Insulin inutero for growth, so she was far smaller than one would expect for a 31 week baby. Infact she wasnt much bigger than alot of 24-25 weekers that she was in NICU with. She was very lucky that I was able to have the injections to mature her lungs, so she was able to escape any severe lung disease, but she now has a seizure disorder and gut related issues that are more than likely associated with her extremely low birth weight

    What is a comfort these days though is that through the www I have been able to locate other families. I am in close contact with 3 other families and its good to share similarities and challanges, share ideas and watch these little miracles grow.

    I'll finish with this quote

    "having a baby is difficult, having a child with diabetes is more difficult, but having a baby with a rare type of diabetes that few understand is extremely difficult and isolating"

    I'd like to thank everyone for the support they have showed us, for educating there own circle of friends on Sarah's condition, it means alot that you take time out of your day to think of Sarah and her daily challanges.

    If you are on Facebook, Sarah does have a page where you can keep up to date with her happenings

    https://www.facebook.com/pages/Sarahs-Story-A-premature-baby-born-without-a-Pancreas/117578034962241?ref=ts
     
  2. GaPeach

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    Thank you for sharing. I know that little Sarah has many struggles to face, but you sound like a truly awesome mom. With you beside her in the battle - she will win the war.
     
  3. MamaTuTu

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    Thinking of you and Sarah today. XOXO
     
  4. kimmcannally

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    Since Sarah's condition is so rare, I imagine you have found this blog already, but if not, here is another family that can relate to what you are going through.

    http://twoorgansshort.blogspot.com/

    May you get all the support and understanding and comfort you need. ((hugs))
     
  5. VinceysMom

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    Thank you for sharing your story with all of us; Sarah has truly been blessed with a most wonderful Mom! Will keep you all in our thoughts and prayers.

    - Kathy
     
  6. SarahsMum

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    Thanks Guys :)

    Kim - I do know Finlays Parents, I actually googled Sarah's condition when we first found out and contacted them through this forum and we have been in close contact since
     
  7. MySweethearts

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    You are a awesome mom, thank you so much for the wonderful post. (((hugs))) I will pray for you
     
  8. deafmack

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    Thank you so much for sharing your story with us. Sarah is so blest to have you as her mom.
     
  9. Cookie Monster

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    Hi Karina,

    Good to see you popping up on this board again. Amazing it's been 2.5 years since we first found out about you and Sarah. Our kids are hard work but with everything else that's gone on in the last couple of years you are coping incredibly. It was hard enough for us to see one child wheeled in for open heart surgery but two must have been hellish.

    And all the care you've provided in the last few years. If you weren't the parent you'd have a degree by now!

    Glad to have witnessed your journey. Looking forward to seeing the road get less bumpy
     
  10. courtneysmom608

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    Thank you for sharing your story. What an wonderful mom to an AMAZING little girl!
     

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