Bilan, born 2010

On Dec 29, 2010 we were blessed with a baby girl whom we named Bilan. We were happy to have her in our lives and we never imagined what we were going to learn about her the following day. After Bilan was born the nurse said she had a loud heart murmur and that it was normal for a newborn to have one. Bilan looked and acted like a normal healthy newborn and no one took her heart murmur seriously. As the day went by, Bilan got more and more sleepy and her hands and feet became purplish blue. No matter what was done to her, she would not wake up and that really concerned me. I voiced my concerns to the nurses and they kept saying it was normal. Later in the day, the pediatrician came by to do an assessment on Bilan and I also voiced my concerns to her. The pediatrician also mentioned that it is normal for a newborn to have a heart murmur and have hands and feet look purplish blue. I told her I understood what she was saying but I felt there was something wrong. So she said she would request an echocardiogram to be done the next day just to assure me that everything was fine.

 

My husband called the family that day and told the baby was born and it was a girl. Our other five kids were being taking care of by our family and the kids were so happy to have little sister in the family. When my daughter Baydan learned that the baby was a girl she said she wanted the baby to be named Bilan and we went with it.

 

After Bilan was born my husband went home to look after the other kids. The next day they came to pick up Bilan from our room to have the echocardiogram and it took long time. As I was starting to get concerned and the Cardiologist walked in to explain Bilan’s result from the echo. She explained that Bilan had Hypoplastic Left Heart Syndrome and there was a chance she could die. Bilan was already admitted to the NICU and the Doctors were thinking about how soon she would need the surgery done and which procedure would be save for her weak heart function. I was worried for her and also how I was going to tell my other kids their sister is sick. My husband and the kids came to see her when the cardiologist was telling me about Bilan and they saw me crying. They were asking why I was crying and were is Bilan. One family member updated other family in the waiting room while the doctors explain to us what would be our choices dealing with this situation.

 

On Jan 4, 2011 Bilan had the Hybrid procedure and she did well. After a week or so she started getting better and then she was transferred from the Pediatric Intensive Care Unit (PICU) to the Intermediate Care Unit (IMC) so the nurses can train me in preparation of taking Bilan home. Bilan ended up staying in the hospital longer due to feeding issues. Everything she ate came back up no matter how slow or small she got it and She was getting her feeding through Naso-gastric feeding tube because she was breathing so fast it was concerning she would aspirate. When the doctors saw that nothing was changing from Bilan's feeding situation and not growing, they decided the best thing for Bilan was to get Gastric tube and Nissen to help her. Even after she got the Nissen she still would have the vomiting motion but nothing came back up so they put her on continuous feed for while. The doctors and nurses tried compressing her feeds to a shorter time period so when we took her home she would not be feeding 24hrs. Finally she tolerated her feeds running over two hours. This meant she would feed for two hours and then be off for one hour and continuous feeding at night.

 

On February 25, 2011 we finally got to take Bilan home with us with that feeding schedule working for her. While we where home I had to weigh her and check her oxygen level every morning and we did good with it for first week. While Bilan was in the hospital my husband was looking after the other kids and managing the house.

 

On March 4, Bilan had regular cardiology appointment but when they did her echocardiogram, the doctor said to take her to hospital right away because she needed to have a cardiac cath ASAP so they can balloon the heart and open the two sides for more blood flow. Bilan had her cath procedure done Monday March 7, 2011 and it went well thank god.

 

On that day, after I made sure she was doing well I went home to take care of my other kids who were sick with strep throat. The next morning I woke up with a headache and fever and it was not good timing for me to get sick because I had to get Bilan from the hospital. I went to the doctor to get tested and the doctor said that I had the strep throat and gave me antibiotics. I called the hospital and told them that I was sick with strep throat and could not take care of Bilan and there is no one else to look after. They were wonderful about it and kept her another day, the next day I picked her up and we went home. Everything was fine from the time we went home until that Saturday morning when I woke up with very painful headache. It was so hard taking care of Bilan while my head hurt so badly. No matter how much medicine I took for the pain did not go way. Finally, I had to go to the hospital so I left Bilan and my other five kids with grandma who knew nothing about taking care of Bilan and my husband was out of town with his new work he got. At the hospital I was told I had meningitis and I had to be admitted. When I told them about Bilan and how there was no one who knew how to feed her or give her medicine, arrangements were made for a social worker to come to help me get Bilan a 24 hours nurse while I was in the hospital.

 

On Monday March 14, 2011, grandma called me in the afternoon while I was in the hospital and said that Bilan is very sick and she has to go to the hospital. They did not know what was wrong with her. I told them to bring her to the hospital as soon as possible and I will call her doctors to let them know what was going on with Bilan. When she got to hospital Nurses tried putting IV line in her but it became impossible because she always had very poor veins. When no one could get her IV placed they took her up to the PICU so they could put a central line in and give her the medicine she needed and do blood work to find out what was wrong with her. The doctors did not know what was wrong with her and it was the scariest day of my life. She was so sick that she was bleeding from everywhere and the doctors did every test they can do for her to find out what was making her so sick but no answer. Bilan end up being in the hospital from March 14 to April 28, 2011 and during that time they tried to get a breathing tube out twice but every time they did that she would get sick again and they would have to put it back in. That is when the doctors said to me if we take out third time and she does the same they would have to place a tracheotomy in her and that got me really scared. The doctors removed the breathing tube the third time and she did wonderfully. After the doctors made sure she was doing well and they taught me all that Bilan would need while she was home with us, we were finally discharged from the hospital.

 

After she was discharged from the hospital we had her with us for about month and half and during that time she was home with us she was always sleepy, tired and breathing very fast that her body would move every breath she took and she would also sweat a lot. She would always get sick with a cold and have respiratory issues that she would have to be admitted every time for over a night or more in the hospital. While Bilan was home she enjoyed playing with her brothers and sisters and they treated her like queen. On June 14, 2011 Bilan had a cardiac cath to check how her heart was doing so the doctors could plan for the second surgery to repair her heart and it went well.

 

After she was out of the hospital she had to go home and take care of her health.

On June 27, 2011 Bilan got really sick and we took her to the hospital to see what was wrong with her. That night she was admitted to the hospital and they said her BNP is over 5000 and She had a very high fever all night. The next day or two she got worst so she had to be intubated so she would not over work her heart. The doctors finally diagnosed Bilan with heart failure and that she would need a heart transplant in order to survive. During this my husband had leave his work to come look after our five other kids while Bilan was in the hospital. We were told that she would have to go to hospitals that do heart transplants for children and the three closest hospitals that they send children to are: John Hopkins (in Baltimore, MD), Children’s Hospital of Philadelphia (CHOP), and Children’s Hospital of Pittsburgh. We chose CHOP because it is closer to Virginia. While we were waiting for things to be arranged, Bilan got more and more sick. She had high fevers most of the time, she kept dropping her sats and she got a respiratory infection that caused her to be put in isolation. Finally everything was arranged for us to be transported to CHOP. On July 26 to 27 of 2011, Bilan and I were transported to CHOP so she could be evaluated for a heart transplant. When we got there, the doctors assessed Bilan and she was scheduled to have a cardiac cath done on July 28th. When the doctor was done he came out to meet with me and said that her lungs are really sick and pressure in her lungs is high and they might not be able to do anything. I worried would they would decide and at same time I had feeling would say no. I knew that all she needed was a heart to survive and I knew she would do well afterward. The transplant team came in and explained that Bilan was not a good candidate for a heart transplant and they would not enlist her. They wanted to help us set up ways for Bilan to pass when we went back to Virginia.

On August 4, we were taken back to Virginia and when we got there we contacted Bilan’s cardiologist and asked her to please do anything they can for Bilan. While we were still at CHOP, I called the Children's Hospital of Pittsburgh and told them about Bilan and how she needed heart to survive. They got her file from CHOP and they looked over it, and god bless their soul, and figured out that something was not right with the cath CHOP did. They said they will do their own cath and evaluate her for a heart transplant if the cath results show different numbers than CHOP. The insurance then stepped in and said Children's of Pittsburgh are not an in-network hospital and that we had to stay with hospitals that are in-network. The doctors started calling around to other hospitals that were in-network and most all of them said they will not take her case since CHOP results showed she was not a good candidate. After all the calling the doctors did, the Cleveland Clinic said they would consider Bilan if the doctors in Fairfax hospital did another cath and results were different.

Around August 16 or 17, Bilan was taken to the cath lab and the results had much better numbers. The Cleveland Clinic said they would evaluate her for a heart transplant. When all the paperwork was done, I do not know what happened, but the Cleveland Clinic came back and said they would no long be able to take her case. So now, we had to start everything from the beginning again. The doctors started calling other hospitals that were in-network. I do not know what made the insurance change their mind but they allowed Bilan to get evaluated by Pittsburgh. On August 26, 2011, Bilan was transferred to Children's Hospital of Pittsburgh. She got evaluated and was placed on the heart transplant list on Sept 9, 2011. We received a call on Sept 17 and were told they have a heart for Bilan. Although it was blood type B and she was type A, they will still take it for her. Around 2 am on September18th, Bilan was taken to surgery. They finished the surgery around 8 am and she did really well. Ten days later she was discharged from the hospital and was admitted to a rehab center for her developmental delays. Since her heart transplant Bilan has blossomed like flower and we are very blessed to have her in our lives. Today she is 5 years old little girl full of life and she has spirit that catches everyone around her. She has so much love in here that everyone is best friend to her.

 

Story by Bilan’s mother, Leyla – Virginia