Monday, August 23, 2010

Dearest Gift




Life. That would be life. It is the greatest gift and we are all here to help each other and protect life. Sometimes, with that gift comes heartache born into it. For our daughter, it was a succession of some heavy burdens, but also some incredible miracles leading up to her amazing growth and health. Our daughter was born exposed to Hepatitis B and C. She was born premature, anemic, with a slight heart murmur and of low birth weight. She later was discovered to have hydronephrosis of her kidneys and further on when we arrived to bring her home to our family, we discovered strabismus afflicting her eyes. Her beginnings were less than a stellar ideal place to start, but they gave her tools, knowledge, and experiences that she must learn in this life.

Amazingly, she is in the 75% range for height and weight on American charts. She has no signs of anemia, her heart murmur, and her exposure to the antibodies of her birthmother's Hepatitis B have not caused chronic HBV... she resolved that miraculously at around age 1. We have corrected her strabismus with surgery and she has had an amazing recovery and catching up with her cognitive, gross and fine motor skills, as when she was tested for teh school earlychild program, she is at 50% ready to go to Kindergarten and that was being in the country for less than a year!

When she came home at the age of 2 years and 2 months, I always kept hope that she did not have Hepatitis C, although her pediatrician said she really probably does because it had been more than 2 years and the maternal antibodies leave by that time. We did a simple blood test and confirmed the HCV. I was very nervous about the next doctor appt and post-poned it for a few months. I knew that HCV has many genotypes that determine how much harder or less hard the disease is to treat. Of course the hardest one is the most common to contract. I set up an appointment with the gastroenterolgist to get her RNA tested and to find out her genotype. I received the lab request but something told me to wait. The doctor said that they were not urgent tests so go ahead and wait 3 to 6 months so we didn't traumatize her any further.

Six months later, we go to the lab and as she sits wrapped in my arms, she starts whimpering about the impending blood draw, so I sat there singing to her in Mandarin, wiping tears from my eyes as her body tensed itself and sweated profusely so much that she went into slight shock from it all and started to drift to sleep. I had two phlebotomists assisting us who just happened to be Asian and I could see the tears start to well up in their eyes as well. One was an elderly man who quietly inquired, "Mandarin?" and I just nodded and kept singing. Even though we were behind a curtain, the entire place became silent as they listened. My nerves of singing didn't exist that day, because my daughter needed me more. My feelings were so heavy that day as I vowed that one day, she would be healthy no matter what it took.

I went and picked up the lab results the next day and read that her liver was very healthy, that indeed the HBV was completely gone, and strangely there was no genotype listed because they had to stop the test. That's okay, I said to myself, she will be having lots of these and we'll do it next time. Flu season hit and we didn't get a doctor appt for months to have the lab results read to us. Finally, it had really been pressing on me for weeks, even dreaming about it so I called the doctor's office and asked if they could ask him to read the results over the phone. He called about 5 minutes later, and the most serendipitous, sweetest words come out of his mouth, "She is negative. There is no sign of Hepatitis C. We have no idea why she doesn't have it, but rarely the maternal antibodies hang on longer than usual. That is why she didn't have a genotype." I was shaking and crying and overjoyed, almost speechless (which is highly unusual for me!) and because I kept stammering and asking questions about how it was even possible, he said we could retest in a year if we wish, because he must have thought I didn't believe him. May 4th is the day my world changed. My perspectives were given a jolt. I was ready for a long haul. My heart went out to all the people who are HIV, AIDS, HBV, HCV, HDV positive and so many other blood diseases, and who may never hear this kind of news, but today was our day to rejoice and they would want that.

I screamed and cheered when I got off the phone, ran and picked up Milana and gave her the most kisses she would allow (and maybe a few that she probably was like, Stop smoothering me! hee hee) and then gave huge bowls of ice cream to all the children. I called my husband and told him, who was of course in shock, and confused. Then he was upset because she was perfectly healthy and yet had to wait two years for her family. I told him that it was because she was meant for our family. I called family members excitedly and we all cheered, cried and overjoyed. All week, I would just think about the news and start to cry again. I get so giddy and happy everytime I think about it, months later. My gratitude cup is SOOOO full for her health. No parent wants their child to hurt.

I never never gave up hope that I would see this day of her being Hep C free, but I imagined I would be 50 or 60 and possibly have contracted it myself, making sure that she was taking care of. I resolved that I didn't care if I contracted it as long as I gave her a wonderful life. I still am amazed by this miracle. I didn't type this immediately; I was worried about saying it too often, like it would disappear as a morning dream. But it hasn't and it's real. I weep happy tears every time I think of it. The burden she unknowingly bore for months was a shared burden for me. Every time I look at nail-trimmers, toothbrushes, razors, band aids, those super-anti-viral wipes you see at the doctors, I pray and say Thank You. My children were taught to respect blood, that as much as it gives life, it can also take it away. That you must treat everyone's blood with sanitary hygiene practices. I have told them that blood requires gloves no matter whose it is because we want to preserve life.
I do want to say for all those who may consider adopting a child who has HCV; for day to day activities, they are like every other child. Unless they have an infection or reduced liver function, you can not tell any difference from one child to the next. Now, when HCV gets bad, it gets really bad, but children who contract it vertically (through childbirth) only have a 4 to 6% chance of keeping it past two years old (they just have the antibodies). If the HCv persists past then, it is considered chronic. The good news is that they have a higher chance of clearing it than adults and they often fair better with it. Little is known about children born with HCV because it is barely being discovered or researched. I have great hopes that in the near future they will have better medicines (like LDN helps the immune system naturally fight infections but there isn't enough funding to push for it to be approved for many illnesses it would help). You only monitor blood exposure and don't share personal hygiene items. They have so much love to give just like every other child and need every ounce of love back. Opening your heart to a child with HCV is an amazing journey. I would do it again in a heartbeat. If you have any questions about children who have HCV, please don't hesitate to contact me. I may be busy but I will answer. It is not a death sentence. Most people die with it, not from it.

Busted Lip

About a month ago, Milana was running in the mall and fell face first on the concrete floor. Four of her teeth went through the inside of her lip and blood just started gushing everywhere. I quickly asked the cashier girls to go get tissues. And they panicked and brought out band aids, wipes, papertowels, toys for the kids, a lei for Milana, a trashcan, some alcohol swabs, etc. One girl said, "I don't know how you are being so calm. I have an 18 month old and I don't know what I'm going to do when my child does this for the first time." I just smiled and laughed, "you get used to it and besides it's all relative." Relative, perspective... I knew that she was going to be ok. I checked her teeth and they didn't fall out or move, her lip was swollen as well as her face from crying, but she was healthy. A bumped lip was the least of what she has gone through. I didn't have gloves at that time and even if she had HCV, I wouldn't have cared, she is my baby girl and I love her with every ounce of my being. I'd give my life for her. Mommy loves you Milana and I'm so thankful you are here with us. Thank you for being my precious daughter.


17 comments:

The Family K. said...

Wow.

I'm rejoicing right along with you at this miracle and am thrilled beyond words for you, Milana, and the rest of your family. God be praised!!

You're a good mother, and the love you have for you little girl shines through and through. I loved reading about how well Milana is doing in so many areas. Wonderful, wonderful stuff.


(Oh, and the new pictures of your kids in the sidebar are wonderful. What a gorgeous family!)

Steve n Coco said...

A miracle-- what a blessing and a miracle!! Thank God for these graces. I'm so glad to hear that you are doing so well!

Lisa said...

Blessings abound!!

I am overjoyed for your family and beautiful Milana!

What a touching and beautiful tribute to this miracle daughter and absolutely it is clear to see why the very strongest among us were sent for this angel who waited.....but waits no more. Home at last....forever and always.

(((hugs)))

Sarah said...

Sob sob sobbing! I'm so overjoyed for Milana and your family that his burden has been lifted from your worries. What a gift she is, indeed! *HUGS!*

Staci said...

So happy to hear your precious girl is healthy! What a little miracle she is :) Hugs to you!

lorabelle said...

This post happens to be one of my all time favorites! You are popping off of the page with pride and glory and it truly touches my heart. She certainly is quite the little ball of sunshine and seems to brighten up your family in many ways...
I'm thrilled to hear such fantastic news and so happy that you shared with us and continue to keep us in the loop.
Your family pics are beautiful, btw!

Robin said...

I am so, so, so happy for your family. I had tears in my eyes reading the wonderful news. Thank you for sharing such a great time in your life with us.

Tisra said...

I know you already shared this with me on the phone, but I just have to say PRAISE GOD one more time!!!!! It is something only He could have accomplished, so he gets all the glory! Your dear daughter has been healed, and I am thrilled for you all!!!!

And, um, that last pic.... FANTASTIC! Her sly little smile fits right into your crazy fun brood. Obviously she's just one of the crowd now. ;-)

Joe and Jane said...

Thrilled at your good news. Beautiful post too!

Wendy said...

Just discovered your blog. Our eighteen year old daughter, adopted at 6 months from the Philippines, came home with Hep. B, contracted from her mother at birth. Our story mirrors your completely! She also cleared the virus from her system at about age 1 and has been completely free of the virus with normal liver functions ever since! When she was about a year old, we took her to one of the top pediatric hepatologists at Yale. After running a series of tests, including a DNA test for signs of the virus (yes, she fell asleep in my arms from sobbing her eyes out from the blood draw), I got a call just like yours. "There is absolutely no trace of virus in your daughter's DNA whatsoever! It's as if it were never there." The doctor went on to tell us how extremely rare it is for children who contract the virus from their mothers at birth not to become life-long carriers. Congratulations on YOUR miracle. Mine is going off to college next month, but even after all this time, I will NEVER forget that phone call!

Louanne said...

this is so exciting and fantastic and wonderful. thank you for sharing!

Annie said...

God is Good! This post filled my heart with joy. I am so grateful for your blessing of a healthy daughter and also for your relief from worry of her future. Thanks so much for sharing!

Shirley H. said...

Thanks for dropping by my blog! My wrist is better now.. Thanks for the concern =)

Hope you are able to search for that awesome diamond in the rough restaurant real soon!

Thanks for sharing your story!
So happy to hear Milana is healthy!

Ruth said...

Such wonderful, wonderful news!! So happy God has blessed you all this way. Take care! Ruth

lorabelle said...

Hey! Where is the hair post?
My blog says it's there from about a month ago and i can't find it...
What did I miss????
Hope things are good!

Future Mama said...

This is so wonderful! My husband and I are just beginning our adoption journey, likely for Taiwan as well, and posts like this just make me smile :-)

http://expectingablessing.blogspot.com/

Anonymous said...

We have just had a similar experience. Thank you for instilling us with the hope we needed to get through this difficult period. We have an 8 year old adopted from China and just came home with a little boy on March 26th. He has multiple special needs and has had 2 surgeries here already. (a MASSIVE hernia repair, cleft lip revision, cleft palate repair, tubes in his ears. He has a heart murmur, a lazy eye, and no comprehensible speech yet (Chinese or English. He is otherwise very happy, loving and cognitively fine. We knew there was a chance he could have Hepatitis B or Hepatitis C on the referral as his labs did not make sense. 6 physicians weighed in and only one suggested that it may not make sense due to Hepatitis C mutations. We were advised by some to not go through with the adoption and put others at risk. We decided to take our chances and go forward.
In April at the age of 2 years, 1 month, he proved to be Hepatitis B negative and Hepatitis C antibody positive. We saw GI on Tuesday and they ordered the RNA levels (now 2 years and 3 months old). Both his pediatrician and GI MD were doubtful that he was still showing maternal antibodies. I, however, never lost hope after reading your post(after a google search of Hep C and adoption). This morning the GI md called with good news. "no detectable levels of the virus"... Though as you know, there are really no words to describe how it feels to hear the words... I would never hesitate to do it all over again even if he remained chronically infected.Yes there are risks (ie. I was covered in enough bloody drool after his cleft repair (1 week ago today) to make me look like I had been to war)and i am relieved, but i would do it all again. I also thought some day I will be infected when they test me at age 60, but it would have been totally worth it. Seeing him jump up and down and flash that huge smile when I walk through a door.... would have been totally worth it.