Over the next 2 months I underwent 3 procedures where doctors inserted a needle into my stomach through my uterus and performed fetal blood transfusions. Abigail was born 6 weeks early at St, Peter's University Hospital, North Brunswick. She spend another 4 weeks in the NICU before she was strong enough to come home. During that time she was given 1 more transfusion. After she was discharged she had to be seen by a Pediatric Hemotologist because her body was not producing red blood cells. Red bloods cells are what carry Oxygen throughout the body, without red blood cells we can not live. Abigail underwent 2 more transfusions and had surgery to insert a PORT-O-CATH, basically a central line that is under the skin. This would be used for her monthly transfusions. We, as a family, accepted the fact that this would be her life, monthly transfusions and doctors constantly poking her with needles.
During this time her doctors were continually coming up with theories and testing for answers as to why this was happening. However, every test was coming back negative. It wasn't viral, it wasn't autoimmune, and it wasn't enviornmental.
3 weeks after Abigail's Port was inserted she began to miraculously produce new red blood cells on her own. At this point her doctors can not explain why or how this is happening. They have exhausted every test they could think of. While we are grateful for her sudden recovery we still do not know what caused the problems and if it will return or is in remission.
That is when we met with the Genetics team at St. Peter's. They have recommened several genetic tests on Abigail, my husband and myself in order to try to get an answer. We have so far completed every test covered by our insurance and all have come back negative. We are asking for help with the costs of the tests not approved by insurance. These test are a full panel of our genetic make up, looking for abnormalities passed from my husband and me to our daughter.
Without this test we may never get the answers as to what is really going on inside our daughters little body AND if her symptoms will ever return. We also have 3 other children that were not affected at birth BUT we don't know if this is something that could affect them in the future or when they have their own children.
Our family thanks you for your support!
- Maria Rivera
- Atika Joshi
- Danielle Olivieri
- Gregory Ris
- Felipe Vega
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