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Baby Bella Cranioysinostosis

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After approach of genetics calling me by phone for my options of termination during my 23 week growth ultrasound, Baby bella was born to this world  on September 17, 2016  at 39 week gestation . At womb she had her head ventricles enlarged calling this condition Ventricumegaly with fluid in her head. She was born with Multiple Cranial Suture Synostosis.  Also is called Craniosynostosis. (kray-nee-osin-os-Toe-sis) her brain could'nt grow in its natural shape and the head is mishappen. Bella had to go in emergency  head surgery on November 23rd 2016, due to all the pressure inside her head changing her symmetrical apperance.  All surgery went succesfull and she is healing and recovering very well. This surgery will be followed by the use of helmets that I don't know yet how the costs will be since our inssurance may cover one, but not two or three as she might need them. The costs fluctuate from 2, 600- 3,000.  Also our co-payment for this surgery will be around 3, 500 dollars. Something that is difficult for us now to cover because in my pregnancy I had to be hospitalized due to Kidney Stones and we are still paying those medical bills expensives. 


After her recovery in hospital , things got a little complicated with her breathing.  She had stridor . Stridor is an abnormal, high pitching sounds produced by airflow through obstructed airway. She had 5-6 scary choking episodes which she catch her air in seconds. Due to this stridor an ENT doctor was called to evaluate Bella.  The ENT scoop her with a camara and now she is diagnose with moderate Laryngomalacia.  Laryngomalacia is a condicion best describe as floppy tissue above the vocal cords that falls into the airway when a child breaths in.  We have our first appointment on December 20th to follow up this condition. Thus, she was not feeding well due to all of this together and doctors sent her home with a feeding NG tube to prevent her to aspirate or any other thing happening to her.  I was breastfeeding her.  Now its a little complicated but I hope we will get this through together. 

Asking for any sort of financial help is not in our character but for the moment the only support I have is my husband for our family of 6.   It is difficult at this moment of all expensives that we are going to be encounter this following months.  December has been difficult to us.  But in the other hand happy cause I have my Bella breathing and seeing her every night going to bed and seeing the sunrise with Bella smile makes my days stronger and stronger.  As I write this, and you read it I feel overwhelmed with emotional feelings.  Is not fair that babies have to pass through surgeries , but most of the times is needed for their life.  In Bella case, surgery was indeed needed for her future needs to live a normal life , growth , social living etc. 

Funds are for covering what was not covered by our inssurance and any other thing related to Bella financial expensives.  Like the helmets or any possible future surgery related to Laringomalacia.  A wish is to have an awlet monitor .  She needs it so much . Please with a little donation from here and there will help us this December for expensives of her surgery as well as future expensives of her condition of Craniosynostosis.  I will be gratefull for any contribution .  Apart of what you can afford please prayers are needed or good thoughts for my little one.  Thank you in advance for all help.
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Donations 

  • Noreen Aukst
    • $25
    • 7 yrs
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Organizer

Issela Dejesus Ayala
Organizer
San Mateo, CA

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