3 beautiful heart babies need families NOW

[melanbob]

Half The Sky has been given one-time permission to advocate for 3 little girls in China who desperately need forever families. They need complex, ongoing surgery and care for heart conditions, and their only chance of these lifesaving treatments is a family.

So, please visit http://www.halfthesky.org/work/3littlegirls.php and pass the word along.

Melissa

[LeapofFaith]

If anyone wants information regarding these conditions, please let me know and I can walk you through the different things these girls are dealing with. While these heart defects are serious, they are managable here in the US. I highly recommend that if you are looking at Lui Fang, you have access to a children's hospital that is equipped to deal with HLHS complicated cardiac issues such as the Children's Hospital of Boston, Children's Hospital of Philadelphia, Michigan, DuPont...let me know if you want to know of a reputable children's hospital in your region. I would love to know what surgery they attempted on her (I think it either had to be the hemi fontan-also known as the Glenn-or a version of the Norwood.) Since she is a transplant candidate, it would be wise to not only check out familiarity with cardiac congenital defects, but also pediatric heart transplants. She is obviously having oxygenation issues as her mucus membranes are very cyanotic, but that totally makes sense for her diagnosis. In fact, I was surprised to see that Cai Ping was as peachy complexed as her photo indicates.

Cai Ping's diagnosis is quite complicated, as well and will likely need several repairs before she can have the Glenn and Fontan which I mentioned above. Although complicated, I actually met a 14 year old boy in my daughter's ward at CHOP with a VERY similar condition doing very well.

I know quite a few children with Zi Jun's diagnosis and they are doing just great.

I completely understand the concerns potential parents have of adopting heart children, but can tell you right now that it is one of the most fulfilling things you could ever do in your life.

If you would like a snippet of our experiences, please visit my daughter's carepages at www.carepages.com and check out an article about the work I do because of Lorelei's presence in my life: http://sev.prnewswire.com/aerospace-def ... 008-1.html

Please don't hesitate to contact me about anything at all.

Heart hugs,
Chelle

[LeapofFaith]

A little more specific information for Cai Ping, as I had a request for a break down of her condition. Remember, a cardiologist (preferably a cardio-thoracic surgeon) is always the final guru on all that is a CHD.

As for Cai Ping, let me try and break stuff down for you. First off, I think the description given on the site is a bit misleading because heterotaxy is a combination of the next several descriptions I am going to give, so it is rather like a syndrome (also like the patient above her). Her liver is probably midline or occuring slightly to the side in some cases instead of being positioned fully on the side of one's body. This can cause issues following the Fontan because often the liver is enlarged post operatively, but can be managed with proper medications. You'll also notice that she is described as having asplenia or polysplenia which is also characteristic of a heterotaxy child. This simply means that she either has no spleen or several tiny spleens which are most likely ineffective. The dextrocardia is also commonly (as if we can use this word freely) in heterotaxy children because the heart is positioned differently. I wonder if she has mirror image dextrocardia, which would be everything in reverse of the 'average' heart. This would be a legitimate question to ask the docs in China. An atrioventricular canal is literally a hole in the center of the heart. This can often be repaired with an occluder (my daughter has one). A DORV (double outlet right ventricle) is a very rare congenital heart defect in which both the pulmonary artery and the aorta known as the great vessels -- arise from the right ventricle. Usually it comes with a VSD which I didn't notice in the report, but heterotzxy also usually has a VSD which is a ventricular septal defect. I'm thinking it would be wise to assume there is one.
Anatomically corrected malposition of the great arteries is a rare form of congenital heart disease in which the great arteries are abnormally related to the ventricles and to each other but nonetheless arise above the anatomically correct ventricles. Along with that, her information also indicates she has pulmonary valve stenosis. Pulmonary valve stenosis is a condition in which the flow of blood from the heart is blocked at the valve that separates the heart from the pulmonary artery (pulmonic valve). It appears she has a patent arterial duct which never closed at birth. This is something that can easily be dealt with in itself. Her left pulmonary artery is either too small to be ideally functional or may not exist at all. She also has a blocked superior vena cava which if memory serves me correctly, can be stented in a cath lab. SVC obstruction is a narrowing or blockage of the superior vena cava -- the second largest vein in the human body. The superior vena cava moves blood from the upper half of the body to the heart.

Recommended procedure listed is the Blalock-Taussig shunt which at Boston Childrens has a 91.3% success rate. They are also indicating that the Glenn and Fontan would follow unless the LPA was hypoplastic (too small) in which case, it would need to be recontructed, stented, or replaced before the aforementioned procedures could occur. My daughter fell in this category, needing banding, coiling, and stenting before she could have the Fontan.

Morbidity for the Fontan is incredibly low~ I think something like .09% at this point. The Glenn is slightly higher.

I would never pressure someone to take this little girl. At the same time, when I see her photo, I see something that Lorelei has which is a fighting spirit. This little girl has some serious MOJO.

[LeapofFaith]

(Another request for information, so I will share the breakdown.)

Zi Jun has been diagnosed with tricuspid atresia. Tricuspid atresia is a type of congenital heart disease in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. The reason why the docs are saying that this is a noncorrectable CHD is because it will always impact a child's life. BUT, it is in no way fatal in normal circumstances. The surgeries used to deal with TA are some of the most successful cardiac procedures in pediatric cardiology, both of which my daughter has had and did very well with. Also, I have a friend in his late 40s with TA and this is his blog: http://tricuspid.wordpress.com/about/. He would LOVE to talk to you about your concerns. Normally related great arteries typically derive from the right ventricle and are often seen in TA. What I did notice with all three girls is that the docs really broke down the diagnosis of the child. With CHDs, often the heart defect is a conglomeration of different defects with one name and has several components. Zi Jun falls into the category. Her primary diagnosis is TA.

[Joanne]

it's amazing how far heart surgery has come. Back when I first started nursing 20 years ago (I worked at a children's hospital), the Fontan had a high morbidity and mortality rate. It's really come far.

[loveourboys]

Does anyone know if there is any type of grant/financial assistance to help with the adoption costs for these three girls?

[LeapofFaith]

Does anyone know if there is any type of grant/financial assistance to help with the adoption costs for these three girls?

I am trying to find out right now. I will let you know when I hear something.

Heart hugs.

Chelle

[LeapofFaith]

Further information I received regarding these girls:

First, I have to say that your response has really moved me. It is no small challenge to take responsibility for another, extremely fragile little life, with so many big unknowns. I have had the great good fortune of getting to know and hold all three of these precious girls. You, if you go forward, will likely not have that opportunity before your commitment is made. For this reason, I feel I must emphasize that HTS is able to tell you about the girls only because their situations are so urgent. They all will need high-risk, complex procedures if their lives are to be saved. There is no guarantee that they will survive. You likely know this but I really want to be sure that you really understand and carefully consider what that means to you and your family.



Now that I’ve said that as clearly as I know how, here are some answers, the best I can offer right now –

1) Two of the girls (CaiPing and ZiJun) will be on the shared agency list. We are still working on that. That means that you will be able to work with the China-approved adoption agency of your choice. If you don’t have one, and you are otherwise ready to move forward, we will help make the connection. The third child (LiuFang) is with an agency. If you are with a different agency, you’ll need to work with the two agencies to figure out next steps. I do know that everyone really wants to help these girls. I’m sure there’s a solution.

2) Many of you wrote and asked whether CCAA will waive any of the new requirements. I have discussed this question with them. They are very likely to waive age, income, medications, length of marriage, perhaps BMI. They are less likely to waive the married couple requirement because it requires a sign-off from several officials. However, if there is a parent who is ready and qualified in every other way and there is not a married couple prepared to adopt one of the girls, I believe (and this is only my strong belief) that they will allow the adoption to proceed.

3) If you haven’t begun the homestudy process, you would need to do so before you could be considered by CCAA. Again, if there is no other paper-ready qualified couple prepared to adopt one of the girls, it is not out of the question that you might be able to do so.

4) You do not have to be a US citizen. If your country has an adoption agreement with China and will allow you to bring home a child with severe special needs (not all will, I understand), that is all that matters.

5) Depending on the status of your own adoption dossier, the process in China should be greatly expedited. You will have HTS at your side and as your advocate in Beijing. We can’t, however, help at all on the domestic side. That will be entirely your and your agency’s responsibilty

6) I don’t know if there will be waivers of fees. I’m guessing that it’s likely the orphanage fee might be waived. I would hope the adoption agency would give you a break. But if you have severe financial constraints, please consider very carefully whether it would be wise to bring home a child that will need ongoing medical intervention.



So, what are the next steps?

1) If you have a dossier logged into CCAA already and are interested, please show the information on our website http://www.halfthesky.org/work/3littlegirls.php to a pediatric cardiologist. If, after discussing with the doctor, you are still interested in moving forward, please write to me. Give me your agency name, basic information, and tell me which child you feel is yours.

2) If you meet CCAA’s qualifications but have not commenced the adoption process, please show the information on our website http://www.halfthesky.org/work/3littlegirls.php to a pediatric cardiologist. If, after discussing with the doctor, and after discussing with your family, you are still interested in moving forward, please write to me. Give me your basic information, and tell me which child you feel is yours.

3) If you don’t meet all of CCAA’s requirements and have not commenced the adoption process, please show the information on our website http://www.halfthesky.org/work/3littlegirls.php to a pediatric cardiologist. If, after discussing with the doctor, and after discussing with your family, you are still interested in moving forward, please write to me. Give me your basic information, and tell me which child you feel is yours. I will present your case to the CCAA to see if they are likely to grant a waiver. Much will depend on the response from the two categories above. I figure that all is possible and worth pursuing at this point!

4) If you wrote to offer advice or assistance, thank you for your generosity. If you are willing, I would like to create a small resource list for prospective parents of the three girls. I would like to put your contact information on that list. If that’s something you’d like to offer, please write back and let me know.



Now, once you have followed one of the “next steps” above, please feel free to write me directly. I’ve also copied Patricia King, our communications director. Pat will be there to help us out in case I get overwhelmed. I’m so thankful that you care about our dear girls.



with love,

Jenny



Jenny Bowen

Executive Director

Half the Sky Foundation

www.halfthesky.org



Half the Sky was created in order to enrich the lives and enhance the prospects for orphaned children in China. We establish and operate infant nurture and preschool programs, provide personalized learning for older children and offer loving permanent family care, medical care and guidance for children with disabilities. It is our goal to ensure that every orphaned child has a caring adult in her life and a chance at a bright future.



Since 1998. Eleven years…thousands of hugs….

[AmyNJ]

Chelle
Thank you for following up about these precious, beautiful girls. I have been praying so hard for them. Please keep us posted.

[ZoeKLT]

Chelle,

Thank you for posting so much information about their conditions - for anyone considering adopting one of these beautiful girls, I'm sure that information is extremely appreciated!

As I was reading what you wrote, I thought that it might also be helpful to help describe to a prospective parent what raising a child who has some of these issues might mean. Is it weekly doctors visits or a series of surgeries? How does it impact their ability to live a "normal" life? What sort of limitations do they have, etc? Two of my three children were WC and understanding not only their prognosis but also how that would impact their day to day lives as well as ours was a big consideration when we were deciding whether to proceed.

thanks-
Zoe

[LeapofFaith]

Chelle,

Thank you for posting so much information about their conditions - for anyone considering adopting one of these beautiful girls, I'm sure that information is extremely appreciated!

As I was reading what you wrote, I thought that it might also be helpful to help describe to a prospective parent what raising a child who has some of these issues might mean. Is it weekly doctors visits or a series of surgeries? How does it impact their ability to live a "normal" life? What sort of limitations do they have, etc? Two of my three children were WC and understanding not only their prognosis but also how that would impact their day to day lives as well as ours was a big consideration when we were deciding whether to proceed.

thanks-
Zoe

Absolutely. So, first I wanted to let you all know that I've gotten in touch with one of Lorelei's pediatric cardiologists and sent him all of the information we have thus far. He is going to get back to me with his topical assessment (realizing of course that we don't have labs, echos, and other pertinent information and his input is coming from the limited information provided). Secondly, I wanted to specify that these three girls have very different diagnoses. The youngest's condition is serious, but not as serious as the other two girls, while the oldest's needs are emergent and I have actually been trying to get resources pulled to have her come over here regardless of adoptive status for medical care.

As far as daily life goes- it is different to have a heart child with significant abnormalities. What I mean by that statement is that while some children may have lifelong murmurs, arrythmias, or corrective surgeries for more minor heart issues that I certainly take seriously, these girls are a little more in depth. All three of them are going to be labelled as 'non-correctable'. This does not mean they will not live long and healthy lives. It simply means that there are certain activities that will never be possibilities for them. Large roller coasters, power lifting, football, lacrosse, field hockey...those sorts of things. With that said, I know of a few HLHS (missing half of the heart) children who play soccer, do gymnastics. Lorelei is going to be doing ballet.

The great thing about a heart kid is that she has had this condition from birth. She innately knows what is good for her and when she needs to relax. With careful education about her heart defect, I believe any of these girls will be able to lead happy, normal lives.

They just need to be aware that Fear Factor isn't in the cards for them.

Lorelei takes 14 different meds. Meds times total probably 10 minutes of the day. They are so routine, they fall in the 'brush the teeth, use the potty' category. At the same time, she is rather unusual in the heart world because, as far as we are aware (with professionals included) her TOTAL diagnosis has never been seen before. Most other HLHS (half-hearted), Tetralogy of Fallot, Tricuspid Atresia, Truncus Arteriosis, and other more complicated heart kids tend to have between 0-3 meds a day including usually aspirin, some kind of diuretic, and perhaps something like Viagra, Digoxin, Heprin, or sometimes Coumadin. The latter two aren't typical. Most heart kids have no issues taking their meds. Once again, they have had them since birth and they don't know any different.

When all is going well, Lorelei sees a pediatric cardiologist once every three months. When we get closer to needing a cath, it may be once a month. Her open heart surgeries have varied with hospital stays ranging between three days (I am so not kidding) to two months because her lungs collapsed. Typical stays are more in the range of one to two weeks. Caths are typically an overnight stay.

Aside from the liver and spleen issues of the second little angel, I didn't see any non-cardiac diagnoses on the girls, so Lorelei's specialists outside of the cardiological world are irrelevant. If you would like more information about them, certainly I can do that for you.

Insurance pays for everything in and out of the hospital EXCEPT for trial drugs. With those, we sign up for studies. The studies are great because they cover most costs and pay from transportation and lodging. If Lorelei ever needs therapies, home health or anything like that, insurance covers that. We stay of the Ronald McDonald House. Both of the kids LOVE that place. Also, the hospital knows that children are a part of families. If you are worried about the fact that you have other siblings, I cannot express to you the understanding and care with which the Children's Hospital of Philadelphia, UNC, Hershey Med, Harrisburg Hospital, Womack Army Medical Center, and Duke have dealt with Cavan. He is ALWAYS welcome. I specifically name institutions because they cover the small, medium, and large scope of hospitals. We are always treated with priority, respect, and care because I have found that health care workers respect the work that we do as parents to ensure that these miracle children enjoy life and they want nothing to do with the demise of health of a small child.

Is it too much work? Hmpf. If you are still reading and haven't gotten freaked out yet, my answer is clearly no. The above sounds incredibly overwhelming, but surprisingly in real life~ it just isn't. It is life. Will life be different than the norm? Sure, but whose isn't?

In fact, we are in the midst of adopting another acute needs child (hence the reason why I'm not adopting the first little girl right now!) Once you know the routine, it is nothing. It is everything. It is rewarding. It is enlightening. I cannot even tell you the passion in my heart for these children.

At the same time, I fully understand that it isn't for everyone. If you would like to talk to me more about a heart child~ I am more than willing! These girls are all fighters. Lui Fang is going to have a rough time it, but she's made it this far and I think she has the potential to survive and thrive beyond all expectations.

Heart Hugs,
Chelle

[ZoeKLT]

Thanks Chelle - that was really helpful - and exactly what I had in mind. Although we are not in a position to adopt these three little girls, I will definitely get the word out.

-Zoe

[LeapofFaith]

As promised, a well known pediatric cardiologist's analysis of these beautiful girls:

Hi Chelle:

I think the first girl (Liu Fang) is probably the most critcal of the group and has the most potential of doing poorly. If she really does have pulmonary hypertension beyond the pulmonary band, this does not bode well for the lungs. The AV valve regurgitation makes repairing the heart difficult, but also makes her a poor single ventricle candidate as well. I suspect that she will need relatively frequent care and may be fairly intense and time consuming. Even if she was appropriate for a transplant, that requires living very close to the transplant center, frequent biopsies and caths, and lots of medicine for immunosuppression. There may not be a very good answer for her.

The second (CaiPing) sounds like she has extremely complex anatomy, and would need a number studies to really know what is going on (including caths, etc). Pulmonary vein anatomy will be very important, as will be the status of her left PA. If she has adequate pulmonary stenosis to preotect her lungs, though,and her other issues are repairable (which they may be) she may do OK and may be appropriate for a glenn and fontan. She woukld probably need close monitoring and lots of cardiology visits and procedures as well, but she is probably not a sick and tenuous as the first girl at baseline.

The thrid one (Zi Jun) sounds pretty strightforward. Again, if her PA perssures are good because of her pulmonary stenosis, she could likely go stright to a Glenn. She will probably do fine and is much less intense than the other two as far as care goes.

[melanbob]

I think the first girl (Liu Fang) is probably the most critcal of the group and has the most potential of doing poorly. There may not be a very good answer for her.

NO!!! This breaks my heart. She looks so much like a friend of mine - feels like I know her (even though I don't).

We'll be increasing our prayers for this little girl, for a miraculous recovery and a wonderful, supportive, prayerful forever family!!

Melissa