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Aiyana Lynn - Precious Angel Baby
$5 Raised
0% of $10k goal
1 contributor
2 Years running
Aiyana Lynn was born June 6, 2013 @ 9:10 am. Until she was born we had no idea that she would be born with severe birth defects. We believe they were caused by the antidepressant Lexapro her momma was put on during the early part of my ... More ...

Aiyana Lynn was born June 6, 2013 @ 9:10 am. Until she was born we had no idea that she would be born with severe birth defects. We believe they were caused by the antidepressant Lexapro her momma was put on during the early part of her pregnancy. The genetics testing came back all normal so her condition was not caused by genetics. She has spent her entire life in Childrens Mercy Hospital in Kansas City Missouri so far but their home is in Manhattan Kansas. Aiyana has a 3 1/2 year old brother and 21 month old brother. 

Aiyana was born with Tetralogy of Fallot (TOF). TOF is also known as "blue baby syndrome," as many babies who suffer from it are born blue or can turn blue at any time due to a lack of oxygen being pumped to their lungs. This can also cause difficulty breathing. There are 4 components to this condition that affected Aiyana.  Tetralogy of Fallot causes low oxygen levels in the blood. This leads to cyanosis (a bluish-purple color to the skin). The classic form includes four defects of the heart and its major blood vessels: Ventricular septal defect (hole between the right and left ventricles) Narrowing of the pulmonary outflow tract (the valve and artery that connect the heart with the lungs) Overriding aorta (the artery that carries oxygen-rich blood to the body) that is shifted over the right ventricle and ventricular septal defect, instead of coming out only from the left ventricle Thickened wall of the right ventricle (right ventricular hypertrophy) Tetralogy of Fallot is rare, but it is the most common form of cyanotic congenital heart disease. Patients with TOF are more likely to also have other congenital defects. Tetralogy of Fallot is repaired with open-heart surgery, either soon after birth or later in infancy. The goal of surgery is to repair the four defects of Tetralogy of Fallot so the heart can work as normally as possible. Repairing the defects can greatly improve a child's health and quality of life. 

*Pulmonary Stenosis* (Hers is severe) When the pulmonary artery is blocked the condition is called Pulmonary Stenosis. The blockage may be the result of too much muscle below the Pulmonary Valve or that the valve itself is too small or unable to open all the way. The blood vessel (the main Pulmonary Artery) may also be too narrow above the valve. This causes restricted, or no blood flow to the lungs, resulting in low O2 levels and causing the heart to work much harder than it should.

*Ventricular Septal Defect* A Ventricual Septal Defect (VSD) is a hole between the two lower pumping chambers (Ventricles) of the heart. This is the most common of all Congenital Heart Defects. In TOF, the hole is very large and situated under the Aorta. This hole is causing a mix of oxygen rich and oxygen poor blood, which results in low O2 levels throughout the entire body. The pressure is also the same in both ventricles resulting in an enlarged heart.

*Overriding Aorta* Normally, the Aorta comes from the left lower chamber of the heart, known as the left ventricle. The Aorta is the largest blood vessel in the heart and is supposed to carry oxygen rich blood from the heart to all parts of the body. When the Aorta is described as Overriding, it means that the vessel is inappropriately positioned and straddles both the right and left ventricle just above the VSD.

*Right Ventricular Hypertrophy* The Right Ventricle is the lower chamber of the heart that pumps oxygen poor, or "blue" blood to the Pulmonary Arteries. Normally, the Right Ventricle muscle is thin. Hypertrophy means the muscle wall of the chamber has become thickened. This occurs in TOF because of the extra work the muscle must do to pump the blood past the blocked Pulmonary Artery ( the PS ) as well as pump the blood to the high pressure Aorta.

She has hypoplastic pulmonary arteries and she was born without her PDA (Patent Ductus Arteriosus) She was on ECMO (heart and lung bypass machine) and at one point during that required kidney dialysis because they had shut down. The dialysis brought them back though and they are fully functioning now. 

She was also born with a unilateral complete cleft lip and a complete cleft palate. She will not take a bottle and has had the Mic-Key button (GJ-tube) placed in her stomach so she can be fed. She also had severe acid reflux so while they were putting in her feeding tube the also did the fundoplication surgery to keep the acid from coming up.

She also has PPHN. Persistent pulmonary hypertension of the newborn (PPHN) is defined as the failure of the normal circulatory transition that occurs after birth. It is a syndrome characterized by marked pulmonary hypertension that causes hypoxemia and right-to-left extrapulmonary shunting of blood. Because a patent foramen ovale and patent ductus arteriosus are normally present early in life, elevated pulmonary vascular resistance in the newborn produces extrapulmonary shunting of blood, leading to severe and potentially unresponsive hypoxemia. With inadequate pulmonary perfusion, neonates are at risk for developing refractory hypoxemia, respiratory distress, and acidosis. Clinically, PPHN is most often recognized in term or near-term neonates, but it can occur, albeit infrequently, in premature neonates.

She was born with Severe Hydrocephalus and her brain formed abnormal during pregnancy. She has a lot of damage to her brain. She also has 3 oxygen deprived spots on her brain from when she was born and didn't have enough oxygen. The hospital she was born at didn't make sure she had enough oxygen before the life flight helicopter from Childrens Mercy came to put her on the ventilator. 

She has had an abnormal EEG, CT Scan, MRI, and hearing screening. 

Baby Aiyana Died 11/10/13 and our hearts are just broken over it...... But we know she is no longer in pain and is in the arms of other loved ones who have passed.

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