Meet our two months old son, Matteo Cutiongco-Guisic.
Baby Matt was born last September 10, 2017 with a rare condition known as CHARGE Syndrome and still fighting the condition in Pedia Intensive Care Unit(PICU) at Philippine General Hospital. CHARGE syndrome affects hearing, sight, breathing, feeding, heart function, and general development needs. Matt requires specialized care for all of these areas and medication might take years.
A few minutes after Matt was born, he was intubated. He was later diagnosed to have a blocked nasal track on both nose( Bilateral Choanal Atresia), humming heart(suspected severe open heart condition), hydrocephalus, di george syndrome, physical deformities( ears and toes), too small genital, very low hemoglobin level and severe Pneumonia. My husband and I felt so bad knowing about his situation. We keep on asking ourselves what went wrong, what have we done, eat, etc... that might have caused this conditions, what have we done or have failed to do. We were so worried about our first born and felt so much guilt and hurt on everything he needs to go through to survive this condition. Seeing Matt being pierced by needles everyday, totally dependent to his ventilating machine, his skin turning reddish, and yellowish, having red spots on the skin and in one instance cough blood is like feeling the pain ten folds. We even reach a point that we asked God questions like why Matt has to go through all of this, are we that bad to deserve this kind of problem and other things doubting our faith. But out of this all this problems, we learn to accept things piece by piece. Seeing our little angel fighting his condition very hard, kicking strong, raising his hands as well when we pray for him over and holding our hands tightly, we came to this resolve that we will do everything for our baby to survive.
On his first three week, he had gone through series of test at Our Lady of Lourdes Hospital and it was later established that Matt has a rare condition known as CHARGE Syndrome. It is very rare that there are only five recorded case so far in the Philippines and all of them has gone through years of medication to address the condition. Iana one of the five, had all condition addressed after 10 years of medication and therapies.
In September 22, his medical team(back in Our lady of Lourdes Hospital) discussed to us all of their findings and one of the recommendations is for him to get a tracheostomy to avoid sepsis and since other possible procedures can't be done on said hospital. It was also discussed that he has a severe pulmonary stenosis and hydrocephalus which should be addressed as well the soonest. It was so hard for us. We feel like we can't take it to see Matt having a hole at his neck but God is good! All situations favored us. A known geneticist and an ENT happen to accept our Pedia's request to give their opinion on Matt's case. Both recommended and facilitated things up for our Baby Matt to be transferred to a bigger hospital that has all the facilities and experts needed for my baby's condition.
In October 1, Matt was transferred and admitted at Philippine General Hospital. So far he is doing good. He have just gone through a respiratory track operation addressing his Choanal Atresia. The operation was a success but they can't proceed yet with his extubation because of his persisting Pneumonia which makes it very hard for Matt to breath on his own. His difficulty in breathing is also affecting his heart condition Severe Pulmonary Stenosis that is why we don't want to rush thing up. He is scheduled to go through heart surgery this December 2017, and we need to provide him with the best support to prepare him for this life saving operation.
As of November 10, our total hospitalization and other related expenses is already more or less a million peso. All our investments and savings used up and our car scheduled for sale. Though both my husband and I have a good paying job, we do admit that we are having a hard time coping financially.
Your donation will help us provide necessary hospital and nursing care for Matt as well as purchase of life saving feeding and respiratory equipment and other support needed by our baby. Thank you!
For Bank Donations, please see our account details below:
Bank of the Philippine Islands
Account Name: Marianne Cutiongco
Account Number: 3569-2327-23
Banco De Oro
Account Name: Marianne Cutiongco
Account Number: 004180047171
Unionbank of the Philippines
Account Name: Leonardo Guisic Jr.
Account Number: 00-232-000887-7
Metropolitan Bank and Trust Company
Account Name: Leonardo S. Guisic Jr.
Account Number: 091-3-091-37101-5