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Aden was born on May 1, 2016 at 37 weeks at Regions Hospital. She was 5 lbs and 8 oz. I had my contractions at 4:00 AM and thought they were braxton hicks like the day before. I went back to sleep and woke up at 6:00 AM to sharp contractions. I timed them and they were really close so we called my siblings to come over to watch our 16 months old son. We got to the hospital by 7:30 AM and I had her at 9:00 AM. She cried a little and then fell asleep most of the time. I thought this pregnancy was much easier than my first because she came fast and delivery went smoothly. I was prepared to go home the next day; however, because she was much smaller, the nurse said that we had to put her through a car seat test to make sure she would be okay in our car seat. She passed the test but the nurse recommended that they check her blood because she seemed very pale. A few hours later the nurse came into my room urgently to tell us that there was something wrong - it was urgent that we had to consent to give Aden extra blood because her hemoglobin was very low at a 5. The normal range for hemoglobin is 12 - 16. Hemoglobin is what carries oxygen to your body. We were in shock and scared because everything seemed normal one moment and it changed quickly in the next.
We decided that it would be best to transfer her to St. Paul Children's Hospital to the NICU where she would have the blood transfusion because she would be in an environment with other infants and with the hematologist doctor. (Hematologists specializes in blood.) While she was transported by the ambulance to the Children's Hospital, my husband and I quickly came back to my room to pack up all my stuff and drove over to the Children's Hospital.
At Children's Hospital, the hematologist doctor shared with us that they would have to get some of her blood to test before giving her the blood transfusion. Since she was so little and didn't really have any popping veins, they decided to extract the blood through her umbilical button which had not dried up yet. It was very hard to watch as the nurse was poking her through the umbilical area, but she finally got the cord inserted in. Then afterwards, they were able to get some blood.
The next day which was day three, the hematologist told us that he wanted to do a bone marrow biopsy on Aden which is to extract some of her blood in the marrow to see whether they were normal or cancerous. He would be putting a needle through her hip area to extract the marrow out. After learning the procedure and risks, we decided to go ahead with it. She was put to sleep and the procedure lasted about 30 minutes. The hematologist shared with us later that the marrow had premature red blood cells which is a good sign because it meant that the cells were producing but just not growing. The cells also looked normal. He ruled out leukemia which was a huge relief to us. It was after this that they gave her the blood transfusion. Doctor told us that Aden wasn't making both red and white blood cells. Red cells carry oxygen and white cells fight off infections. This meant that she had a weak immune system.
We continued to stay at the NICU for a week and were discharged with no diagnoses. It was also stressful because my feet were swollen and I was walking most of the time to the microwave to disinfect the bottles so my feet did not get better.
However, in June Aden had a fever and we ended staying at the hospital for three weeks. It turned out she had an ear infection and since she had a weak immune system, she couldn't fight it. The ear infection had paralyzed half of her right face. After the antibiotics, she came back to normal and we were discharged, again without any diagnoses.
The months after this became weekly or monthly visits to the Children's Minneapolis Hospital- Hematology and Oncology Clinic where we would spend 4 or more hours for Aden to get blood transfusions. We still didn't know what she had until the doctor did a blood test of her gene and shipped it off to Cincinnati for testing. After 6 weeks, it came back that one of her gene had mutated. This is the RPL35 gene. Finally, the doctor told us that Aden's condition is called Diamond Blackfan Anemia (DBA). This was a condition that could be inherited or is a spontaneous mutation in the embryo. Well, Dai and I both tested and we didn't have this mutation gene so that meant Aden had a spontaneous mutation in the embryo. This rare condition effects about 800-1000 people in the world. This condition could impact your blood and physical traits. For Aden, it impacts both her red and white blood cells only. She looks normal and healthy on the outside.
The temporary way to treat this condition was to continue to give her blood transfusions every 3-5 weeks; however, with the blood being transfused all the time, it meant she would be receiving an overload of unnecessary iron which would be deposited in her heart, liver or other organs which could lead to other things. There was also steroids- which was recommended for her to try when she turned 1 year old. We have been trying this but it did not work for Aden. Steroids have their own side effects like shortened growth, glaucoma, and etc. However, doctors have seen that steroids have kept up the hemoglobin level for other DBA patients.
Finally, the only way to solve this DBA problem is through a bone marrow transplant. Yesterday on 8/15/17 we met with a transplant doctor who told us that Aden does not have a match in the registry because there are not many Asian donors. The registry consists of 70% Caucasian donors and race is a factor in the match. We would like to give Aden a bone marrow transplant if she has a match. Unfortunately, her brother Justice is not a match. If you are Asian, please consider getting tested. It doesn't mean you will be a donor. In fact, the chances of donating is 1 in 430 only. This is a way in which you can help save a life immediately. Thank you so much for considering this.