Birth Defects

The first two reasons for the shift in orphanage populations in China are both positive ones – an evolving attitude towards girls and the sharp increase in domestic adoption. The third major reason, however, is quite sad.

Birth defects in China have risen 70% in the last decade. (See Source 1). Mr. Jiang Fan, of the National Population and Family Planning Commission stated that birth defects now affect one in ten households in China, with a child being born every 30 seconds with a medical need. Chinese reports place the number of children being born with special needs each year at between 1-3 million (See Source 2), compared to the estimate by the March of Dimes that 120,000 babies are born with birth defects each year in the United States. One of the reasons cited for the marked increase in China is environmental pollution, as the World Health Organization states that China is home to 16 of the world’s dirtiest cities. (See Sources 3, 4, 5, 7). The most common birth defects in China include congenital heart disease, extra fingers and toes, cleft lip and palate, and neural tube defects…but the special needs range from mild to severe and affect every body system.

Many babies are abandoned when they are born prematurely.

With this increased rate of birth defects has come a rise in the abandonment of children with medical needs. As I stated in the first blog of this series, orphanage directors now tell me that 90-98% of the children entering their care have some sort of special need. The majority of these children are abandoned for one of two main reasons: the stigma surrounding children with birth defects and the high cost of medical treatment.

There are still many superstitions and misinformation about birth defects in China, especially for visible special needs. These children are sometimes seen as cursed or unlucky, and many times, it is the extended family who will not allow a child with a special need to remain in the family circle. I have met dozens of parents in China who have told me that they were pressured by family members to abandon their children born with cleft. And while the stigma of being born a girl is now fading, the stigma of being born with special needs is still deeply entrenched. We are definitely starting to see positive signs, however, that this is slowly changing, as just in the last two years, more and more children with repaired cleft lip and heart defects have been chosen for domestic adoption from our programs. This is an encouraging step, indeed.

Babies abandoned with heart defects are quite common for most institutions.

Other children with special needs are abandoned because their families don’t have enough money to pay for their medical care. I know many Westerners think China must have free health care, but that isn’t the case. Medical procedures — even emergency surgeries — will often not be done unless families can pay upfront.  Last year, China reported that 128 million people in its country still live on less than $1 a day. (See Source 6) Ten years ago, when we first began doing medical care in China, a heart surgery cost $3,000 to $5,000 USD. That price has now tripled to approximately $10,000 to $15,000 to save a child’s life…an amount far beyond most impoverished families living on $300-$500 per year.

Cleft lip remains one of the most common special needs seen in Chinese orphanages.

We have seen rural families truly desperate to see their child healed, even crying and offering to give their children permanently to our team members if it might mean that he or she could be saved. For parents without hope, sometimes abandonment seems like the only answer. Many of the newly abandoned children we are asked to help have needle marks or other indications that their parents tried to get them care. For example, we were once asked to help a six-year-old boy who was abandoned in a grocery store who still had IV marks in his arm. He had severe heart disease, and I have to believe that his parents tried to help him but ultimately came to the sad realization that they just couldn’t afford his operation.

Many babies enter orphanages with spinal tumors, which become medical emergencies when they break open.

Now when I visit orphanages, almost every crib is filled with a baby who requires some sort of medical care. This of course presents very new and complex challenges for the orphanage staff, especially in rural areas. Nannies are now serving not only as caregivers, but as nurses, special education teachers, and therapists as well.  On Monday, I will discuss a few of these challenges and then conclude this series with why I feel that international adoption is still vitally important.

~Amy Eldridge, Chief Executive Officer

Sources:

1) http://english.cri.cn/6909/2011/09/22/189s659486.htm

2) http://www.reuters.com/article/2007/10/29/environment-china-birth-dc-idUSPEK15525020071029

3) http://www.sciencedaily.com/releases/2011/10/111019185134.htm

4) http://www.reuters.com/article/2011/07/18/us-china-pollution-birthdefects-idUSTRE76H50J20110718

5) http://www.cbsnews.com/8301-18563_162-2895653.html

6) http://www.chinadaily.com.cn/china/2012-06/25/content_15522162.htm

7) http://shanghaiist.com/2013/01/16/7_chinese_cities_listed_in_10_most.php

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5 Comments to “Birth Defects”

  1. Mandy 18 January 2013 at 11:47 am #

    Amy,

    This has been such an informative series…info that I had already learned thanks to organizations like LWB. May I suggest that you take these blog posts and make them into a pamphlet or e-pamplet of sorts that can be downloaded and used to educate not only adoptive families but also those who ask questions about Chinese adoption? Maybe this could even become a section on LWB’s site?

    Thank you for your care and dedication!

  2. Tonya Garrick 18 January 2013 at 2:12 pm #

    I have just found this blog and am really learning a lot reading these articles. Thank you for sharing!

  3. Elizabeth 18 January 2013 at 4:17 pm #

    I agree with Mandy! This has been so beautifully explained. I love the idea of making this series an easy-to-find resource somehow!

  4. Patricia Woods 18 January 2013 at 4:43 pm #

    Dear Amy, Thank you for this timely information. My husband and I received a medical diagnosis for our 4 1/2 year old son adopted from China at 14 months in 2009. Visually he had cleft lip and palate and hypertonia. The MRI confirmed what we already knew in our hearts – that he was likely a preemie and/ or was born with a very low birth weight. His diagnosis is PVL – CP. The cleft was repaired in Beijing by his foster home and he has been receiving PT, OT, and speech therapy since we brought him home. He is Amazing and loved by all. He will start a research project next week involving BOTOX. I have never met a kid who tries as hard as he does and laughs and brings joy to everyone he meets. Intellectually he is excelling and will go to “regular” kindergarten in the Fall. In the meantime, therapy, AFOs, a night time brace and a lot of love will help improve his movement difficiencies. There is nothing that is going to slow this little boy down! Thank you for all you do! May God continue to bless you!

  5. Leslie 18 January 2013 at 9:36 pm #

    And all I can do is sit here and cry for the parents who face the absolutely unimaginable choice of watching their child die a slow death from heart disease or abandon him or her in the hopes they will receive the life-saving care they need. As I type, my 2-year-old is “braiding” my hair and I think of her birthmom and birthdad and I do wonder, did they have to make this choice? It is very likely. She wasn’t a newborn when she was found. The demographics and the facts we do know point to this very real possibility.

    And honestly it makes me angry too. Why are we so privileged? And other parents in this world are not? While I fret over when our baby girl’s heart surgery will be this spring and when will this flu season end (please soon!), I know that we have world-renowned care just up the road and a health insurance policy that will pay for all but a very reasonable deductible for her heart surgery. If we didn’t have that, what would we do for our baby girl???

    It is just not fair.

    And then the environmental pollution. Isn’t so much of it caused by the goods produced in China … that end up in the US. Don’t even get me started on that. What can we do?

    I just shared about the Unity Fund with our children’s taekwondo master who is really having deep, soul-searching questions about what he should be doing. He is from Korea, but he has been very touched by our children’s stories. Our two Chinese-born sons take taekwondo from him, and I told him he can do more.

    He told me, “many of us pray, but not many of us do, not many of us act on these feelings that we should do something.” So, I told him I thought of something he could do right away, to help a family KEEP their child by contributing to a fund that pays for surgeries these children must have to survive. He said he was going to look into it. You never know the ripple effect.


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