Help Omphaloceled Baby Unami
Donation protected
Unami Nkomo Gumede was born on the 16th of May 2017 to Nothando Mathuthu Gumede my daughter and Welcome Nkomo. 24 weeks into the pregnancy a routine abnormality scan revealed that this precious foetus had a giant omphalocele,which is a rare congenital defect.An amniocentesis further confirmed this.She was advised to terminate the pregnancy as the baby was expected to be grossly deformed but she took a leap of faith and allowed theCreator to do His will.
Omphalocele is a congenital defect that occurs in 1: 4000 birth and is associated with a high mortality rate of 25%,severe malfomalformations such as cardiac anormalies, chromosomal defects and several other defects.With Omphalocele,abdominal organs like the liver and intestines are born outside of the body,distinctly visible but encased in a membrane.Baby Unami was also born with bilateral hypoplastic lungs (both lungs didn't mature fully when she was in utero) For this reason amongst several others,baby Unami had to be fully ventilated for the 1st 6 months of her life in ICU,had a Tracheostomy connected to oxygen at 9 months and only discharged on a home ventilator.Normal feeding is not possible because of her defective anatomy so she has a Naso Gastric tube in situ always on continuose feeds.
Baby Unami was also born with 2 holes in her heart known as a Patent Ductus Arteriosus (PDA) which was surgically ligated at 9 months,and an Atrial Septal Defect (ASD) which the surgeons thought it best to delay attending to as baby Unami had already undergone a lot of surgical procedures in her 1st year of life.In an ASD there is a hole in between the 2 upper Chambers of the heart resulting in shunting and mixing of oxygenated and de oxygenated blood.This increases her risk of Cerobro Vascular Accident (Stroke),Congestive Cardiac Failure, Arrthmias and Pulmonery Hypertension which she is currently being treated for.She has always been on approximately 12 drugs including Viagra which erodes her hymen but is vital for her survival.
On the 17th of September 2018 at 16 months,Unami successfully underwent a 4 hour long Abdominoplasty,where they reconstituted her abdomen and put back her abdominal contents inside the cavity.We were hoping that her lungs would fully develope and reach optimal functionality so that she could be wearned off ventilation.This hope was crushed by any Echocardiogram conducted by the Cardiologist in consultation with the Pulmonologist which revealed that the ASD had not self closed but rather enlarged with her growth and now requires urgent surgery.
Medical Aid only pays 100% of the scheme rate but the Cardiac Surgeons charge at a rate of 500%of that scheme rate due to the complexity, duration and high risk nature of the procedure.The shot fall then remains to be paid by the member.Unami has fought on for the last 16months of her life and braved all her defects,major operations and multiple hospital admissions away from her family.Please be so kind to generously donate funds to facilitate the scheduled urgent major open heart surgery to save precious baby Unami (meaning God is with me).We hope that this will be the last huddle baby Unami will have to face and she can start living a normal healthy life like all children deserve.
Nothando's wish and long term plan is to eventually open a Foundation for underpriviledged babies with Omphalocele out there who do not usually make it past their 1st year of life due to the lack of funds,resources and access to highly qualified experts.She believes that No child deserves to die from these very rare complex congenital defects.Unami( my grand daughter)has made it this far and so can any one of them!!!
Omphalocele is a congenital defect that occurs in 1: 4000 birth and is associated with a high mortality rate of 25%,severe malfomalformations such as cardiac anormalies, chromosomal defects and several other defects.With Omphalocele,abdominal organs like the liver and intestines are born outside of the body,distinctly visible but encased in a membrane.Baby Unami was also born with bilateral hypoplastic lungs (both lungs didn't mature fully when she was in utero) For this reason amongst several others,baby Unami had to be fully ventilated for the 1st 6 months of her life in ICU,had a Tracheostomy connected to oxygen at 9 months and only discharged on a home ventilator.Normal feeding is not possible because of her defective anatomy so she has a Naso Gastric tube in situ always on continuose feeds.
Baby Unami was also born with 2 holes in her heart known as a Patent Ductus Arteriosus (PDA) which was surgically ligated at 9 months,and an Atrial Septal Defect (ASD) which the surgeons thought it best to delay attending to as baby Unami had already undergone a lot of surgical procedures in her 1st year of life.In an ASD there is a hole in between the 2 upper Chambers of the heart resulting in shunting and mixing of oxygenated and de oxygenated blood.This increases her risk of Cerobro Vascular Accident (Stroke),Congestive Cardiac Failure, Arrthmias and Pulmonery Hypertension which she is currently being treated for.She has always been on approximately 12 drugs including Viagra which erodes her hymen but is vital for her survival.
On the 17th of September 2018 at 16 months,Unami successfully underwent a 4 hour long Abdominoplasty,where they reconstituted her abdomen and put back her abdominal contents inside the cavity.We were hoping that her lungs would fully develope and reach optimal functionality so that she could be wearned off ventilation.This hope was crushed by any Echocardiogram conducted by the Cardiologist in consultation with the Pulmonologist which revealed that the ASD had not self closed but rather enlarged with her growth and now requires urgent surgery.
Medical Aid only pays 100% of the scheme rate but the Cardiac Surgeons charge at a rate of 500%of that scheme rate due to the complexity, duration and high risk nature of the procedure.The shot fall then remains to be paid by the member.Unami has fought on for the last 16months of her life and braved all her defects,major operations and multiple hospital admissions away from her family.Please be so kind to generously donate funds to facilitate the scheduled urgent major open heart surgery to save precious baby Unami (meaning God is with me).We hope that this will be the last huddle baby Unami will have to face and she can start living a normal healthy life like all children deserve.
Nothando's wish and long term plan is to eventually open a Foundation for underpriviledged babies with Omphalocele out there who do not usually make it past their 1st year of life due to the lack of funds,resources and access to highly qualified experts.She believes that No child deserves to die from these very rare complex congenital defects.Unami( my grand daughter)has made it this far and so can any one of them!!!
Organizer
Shillay Hilda Mabasa-Mathuthu
Organizer
England