Congenital Heart Defect

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Kayla and Josh: ADNP syndrome

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Kayla and Josh started realizing that their son Parker was falling behind in his development. They went to a geneticist, and through genetic testing Parker was diagnosed with ADNP syndrome- a genetic mutation which can include developmental delays, Autism, and distinct facial features. At the time, he was the 85th person to have been diagnosed in the world. Kayla and Josh open up about the joys and sorrows they have experienced raising Parker, and how they feel blessed they were chosen to raise him.

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Brittany and Tyler: Hydrocephalus, Encephalocele, and other complications.

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Brittany and her husband Tyler struggled for years to get pregnant. When she got pregnant with their son Max, they were ecstatic. During a prenatal ultrasound, doctors found a multitude of abnormalities, including a club foot, heart abnormalities, missing brain matter, and Hydrocephalus. Doctors also found that Brittany had Amniotic Band syndrome.

Max lived an amazing 5 weeks before he passed away. He constantly amazed medical professionals and his family with his abilities despite having almost no brain. He has forever changed his parents live’s, and has made a big impact on people all over the world.

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Kim: CHARGE syndrome

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When Kim went in for a prenatal ultrasound, doctors found her baby had a cleft lip and a heart defect. After her daughter Jackie was born, it was discovered that Jackie had CHARGE syndrome. In the begining Kim struggled with how to cope with Jackie’s diagnosis. Jackie has changed Kim and her family’s world for the better. She has shown them what really matters in life, and that it is precious.

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Kierra: 22q11 Deletion syndrome, Tracheomalacia, Pulmonary Atresia

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While pregnant, Kierra went in for a routine ultrasound and was told her daughter, Evanna had a major heart defect. Doctors found several other indicators that pointed to Evanna having 22q11  Deletion- also known as DiGeorge syndrome.

After Evanna was born, Kierra and her husband received an official diagnosis of 22q11 Deletion syndrome.

When Evanna was 5 months old she had her first open heart surgery; and subsequently spent 400 days in the hospital due to complications.

Evanna has a major heart condition know as Pulmonary Atresia– MAPCA’s (Major aortopulmonary collateral arteries) which is often a complication found with 22q11 Deletion syndrome. She also has a critical airway, known condition known as Tracheomalacia.

Visit Kierra’s blog at theirvinefamilyblog.com

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Katherine and Jeff: Ellis-van Creveld syndrome

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While pregnant, Katherine’s baby Arabella was diagnosed, and then re-diagnosed with several conditions that were all fatal forms of Dwarfism, including Thanatophoric Dysplasia, Short Rib Polydactyly syndrome,  and a major heart defect.

She and her husband Jeff were told to either terminate the pregnancy, or plan a funeral. They chose to continue the pregnancy. Arabella is now a beautiful 2 year old. She was officially diagnosed with Ellis-van Creveld syndrome, a sub-type of Short Rib Polydactyly syndrome. This syndrome has a 30-50 percent survival rate.

Katherine is now expecting her third child, Shiloh. Shiloh has also been diagnosed EVC, as well as a major heart defect. They do not know if Shiloh  will live, but are grateful for everyday they have with her.

 

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A Snapshot Story- Jessica: Down syndrome

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When the  doctor called Jessica  with test results that showed her unborn son would have Down syndrome, she immediately felt a sense of fear and anger she had never experienced before. Negative thoughts flooded her brain for days and weeks. She felt resentment and anger towards her pregnancy.

When she told her closest friends and family the news; their reactions were overwhelmingly positive and supportive. They showered her with love and told her how amazing he was going to be. And they were so right.

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Maria: Currently pregnant with a fetal diagnosis of Trisomy 18 or Edwards syndrome

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At 10 weeks pregnant Maria found out her little girl would be born with Trisomy 18, or Edwards syndrome.

Maria chose to continue the pregnancy and is now 36 weeks pregnant. She has uprooted her life and moved to a new state so she can deliver at a hospital with the most advanced equipment, by Dr.’s with more experience.

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Krystal and Dusty: Spina Bifida and a Heart Defect

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Early on in Krystal’s pregnancy, she was told that their baby, Amnesty, had Spina Bifida. Dr.’s said Amnesty would have little leg function, and there may be issues with her brain being squeezed by excess fluid, causing brain damage and bladder issues. They were also told her had a congenital heart defect (CHD). Krystal and Dusty saw many different doctors throughout the pregnancy, many said they should terminate the pregnancy.

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