Help us stay with Grace after her liver transplant
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Before April had GraceLyn she was told that GraceLyn had some problems with her heart and that her belly and organs were on the wrong side. They also told us she had Turners syndrome and that her liver was bigger than normal.
April had GraceLyn March 2nd in Fort Wayne due to them having a good NICU as it was needed due to the possible issues she could be born with. When GraceLyn was about 3 weeks old they told her famy that she had to go to a bigger hospital due to GraceLyn's bilirubin being high. They sent her to Cincinnati Children's Hospital. They notified GraceLyn's family after being there for a week and a half that they could do a surgery that could help GraceLyn. The surgery was for biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. Cells within the liver produce a liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis), and eventually liver failure.
The causes of biliary atresia are not completely understood. For some children, biliary atresia may occur because the bile ducts did not form properly during pregnancy. For other children with biliary atresia, the bile ducts may be damaged by the body's immune system in response to a viral infection acquired after birth. It could cause other problems to the heart, the spleen (polysplenia), Blood vessels (inferior vena caval anomalies, preduodenal portal vein), Intestine (situs inversus or malrotation).
Symptoms include:
Jaundice − a yellow coloring of the skin and eyes due to a very high level of bilirubin (bile pigment) in the bloodstream. Jaundice caused by an immature liver is common in newborns. It usually goes away within the first week to 10 days of life. A baby with biliary atresia usually appears normal at birth, but develops jaundice at two or three weeks after birth.
Dark urine − caused by the buildup of bilirubin (a breakdown product from hemoglobin) in the blood. The bilirubin is then filtered by the kidney and removed in the urine.
Acholic stools (clay-colored stools) − because no bile or bilirubin coloring is being emptied into the intestine. Also, the abdomen may become swollen from a firm, enlarged liver.
Weight loss and irritability − develop when the level of jaundice increases.
The surgeon soon found out they couldn't complete the surgery due to her organs and belly being on the wrong side. So it ended up that GraceLyn has to have a liver transplant.
We are asking you to help the family with the cost of the stay for GraceLyn while she has her liver transplant. GraceLyn will have to be in Cincinnati for 8 weeks. Her parents need to stay there for 6 weeks with her. The 1st week GraceLyn will need to stay in the NICU, the 2nd week she will have to stay on the liver floor. Then the other 6 weeks she will be with the parents, but she will be seeing the liver team twice a week. That means they will need to stay in a hotel. We are asking for help with the cost of their hotel, gas, food, and a babysitter if they need someone to watch their 1year old while they are away.
The Ronald McDonald house is not accepting new applications right now with the virus that's going on.
April had GraceLyn March 2nd in Fort Wayne due to them having a good NICU as it was needed due to the possible issues she could be born with. When GraceLyn was about 3 weeks old they told her famy that she had to go to a bigger hospital due to GraceLyn's bilirubin being high. They sent her to Cincinnati Children's Hospital. They notified GraceLyn's family after being there for a week and a half that they could do a surgery that could help GraceLyn. The surgery was for biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. Cells within the liver produce a liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis), and eventually liver failure.
The causes of biliary atresia are not completely understood. For some children, biliary atresia may occur because the bile ducts did not form properly during pregnancy. For other children with biliary atresia, the bile ducts may be damaged by the body's immune system in response to a viral infection acquired after birth. It could cause other problems to the heart, the spleen (polysplenia), Blood vessels (inferior vena caval anomalies, preduodenal portal vein), Intestine (situs inversus or malrotation).
Symptoms include:
Jaundice − a yellow coloring of the skin and eyes due to a very high level of bilirubin (bile pigment) in the bloodstream. Jaundice caused by an immature liver is common in newborns. It usually goes away within the first week to 10 days of life. A baby with biliary atresia usually appears normal at birth, but develops jaundice at two or three weeks after birth.
Dark urine − caused by the buildup of bilirubin (a breakdown product from hemoglobin) in the blood. The bilirubin is then filtered by the kidney and removed in the urine.
Acholic stools (clay-colored stools) − because no bile or bilirubin coloring is being emptied into the intestine. Also, the abdomen may become swollen from a firm, enlarged liver.
Weight loss and irritability − develop when the level of jaundice increases.
The surgeon soon found out they couldn't complete the surgery due to her organs and belly being on the wrong side. So it ended up that GraceLyn has to have a liver transplant.
We are asking you to help the family with the cost of the stay for GraceLyn while she has her liver transplant. GraceLyn will have to be in Cincinnati for 8 weeks. Her parents need to stay there for 6 weeks with her. The 1st week GraceLyn will need to stay in the NICU, the 2nd week she will have to stay on the liver floor. Then the other 6 weeks she will be with the parents, but she will be seeing the liver team twice a week. That means they will need to stay in a hotel. We are asking for help with the cost of their hotel, gas, food, and a babysitter if they need someone to watch their 1year old while they are away.
The Ronald McDonald house is not accepting new applications right now with the virus that's going on.
Organizer
Andrew Slee
Organizer
Shipshewana, IN
