A team of people began working together on Hope's chance as soon as we got home. Her labs and ultrasound were reviewed. The orphanage agreed to get another set of updated labs and another ultrasound. Her orphanage was giving her US formula and a supplement recommended to help her gain weight through fats which her liver could handle. Several physicians at hospitals in the Boston area put their heads together. We approached the liver transplant team at Boston Children's Hospital, at Johns Hopkins, and at Riley. The people here graciously offered time, thoughts, prognosis, and explanations. Physicians contacted other physicians they knew, including doctors from around the world. Mothers who have children with biliary atresia from China (Hope's suspected diagnosis) gave direction, words of wisdom and offered prayer support. The number of people this special baby has touched grew exponentially.
When our friends in China first told me that we were asked to go to Henan, I have to admit I was a bit unexcited. Guangxi is where my heart is. It is where I am always calculating to get back to. My girls are from there, and it is the place I long to work and help. I wanted to be there the whole time. My friend described how much help was needed in Henan, and I could not refuse. Somehow I trusted God's leading there. Now, as I see the bigger picture, I know one of the reasons He wanted us there. The first day we arrived, several Christians would come meet us in our hotel that afternoon. We would learn that they were running programs in Henan, and were getting very little practical, financial, or emotional support even from their own local church. One of these programs was for children over the age of 6, whose local families were unable to take care of them. The other program was a palliative care/hospice home for children birth to three, run by several people. It is called House of Love (not Maria's Big House of Love), staffed by Christians including one named Scarlet who is a nurse. I did not have the chance to visit these programs, but my travel mates and children did on one of my teaching days. They remarked at what an amazing job these brothers and sisters were doing, with some of the most forgotten children.
This week, I got word that sweet baby Hope was declining quickly. She lost weight and showed little appetite. Her little spirit was poor. Her abdomen was much more swollen than before. Seeing the photos of her tense, huge abdomen and sad look in her eyes was utterly heartbreaking. One of the MD's here said they did not expect her to live more than two months, based on her last labs taken in December. The ideas of trying to get her stronger and to the US for surgery, or anywhere else for that matter, were fading away. Little Hope was suffering and living alone in an orphanage. Despite the orphanages' attempts to provide care for her, it was the thought of being so sick with no one to comfort her that began haunting me. My two youngest children, who have had a simple viral cold over the past few days, needed so much extra care and comfort. Feeling sick makes them so much more needy. Little Hope has had no one to even hold her as she feels nauseated and ill. It was this that my dear friend heard from me, and responded back with "pray that God would send an angel to comfort her".
This morning, I woke up to several text messages from my friend in China who said she had some news. We had been asking the orphanage director if Hope could be sent to an NGO for more care. If there was any chance for Hope to get some special attention, it would be through something like this. My friend wanted to let me know that the orphanage has agreed to let baby Hope go with Scarlet, the nurse who helps run the palliative care/hospice home, in Henan. And, she went on to tell me, that Scarlet's nursing training is in pediatric liver disease. She can fly down to Guangxi on Thursday, and fly back with baby Hope. She can get Hope started on a diuretic to help make her more comfortable, and see if she can help Hope gain weight. At the very most, she can hold this precious baby and comfort her in here final days this horrible illness.
The prayer of my dear friend was heard, and answered very quickly. Scarlet is our living, breathing angel. She is Hope's angel. When we went to Henan, I had no idea that Hope's life would be one of the purposes of our time there. No clue. I am embarrassed over my reluctance to go, and am in complete awe of God's goodness even in the midst of horrible suffering. Suffering of an innocent baby girl born in a country lacking the resources to effectively help her medical condition. I am in awe of how Hope's story is unfolding, and find comfort in knowing that after tomorrow, she will not ever be alone again. I am in awe of this provision for baby Hope. And I am in awe over the angel who will care for her, a sister I had the privilege of meeting, in a connection which can only be explained by God.
our team with House of Love staff
