Sonia and the Urgent Medical Visa Needs - Updated 1/21/2011 at 8:45 AM

Update as of January 21 at 8:45 AM - one of the pediatric cardiologists in the states who has reviewed Sonia's echocardiogram has urged us to pass on the following update:

"Sonia's echocardiogram was NOT normal. She has a ventricular septal defect which now makes everything make more sense. She does likely need surgery. He requested that I update this to read that she has a "ventricular septal defect..... possibly an atrioventricular canal defect."

More to come as I have it.

Tom

Okay, here's some more details as I know them (relayed from Susan Westwood)

Sonia is a 4 month old who has been with us since she was 6 days old.

We suspect that she has downs syndrome and shows signs of an obstructive airway condition and congestive heart failure.

She has been assessed by two cardiologists in Haiti.

An echocardiogram showed a patent foramen ovale (don't ask me what that means - but the important people will know) but no other structural defects.

Initially she responded well to cardiac medications (digoxin and lasix) but she is now critically ill for the third time since she was admitted to GLA as a 6 day old infant.

Minor viral infections cause her to develop a barking cough and severe respiratory distress.

She then goes into respiratory failure and has needed CPAP on two occasions since she was born.

Based on her current condition , Susan and Dixie will probably have to start her on CPAP again today.

DSCF1303[1]

Our Haitian pediatrician reviewed Sonia today and she strongly suggests that we obtain a medical visa so that Sonia can be assessed by a pediatric pulmonologist, pediatric ENT and pediatric cardiology specialist outside of Haiti. She said that it is not possible to safely perform any further investigations or treatments in Haiti.

Susan and Dixie are both afraid that Sonia will die unless we can get her to North America soon.

So what can you do to help? A few suggestions:

It goes without saying (but I'm going to say it anyway) - Pray for Sonia and for Susan and Dixie as they fight to keep her alive. Pray also that the right doctors and medical facility will be found. Pray also that the governmental regulations for getting her a passport and visa will go smoothly.

If you know anyone who has connections to any of the medical specialties spelled out above:

Pediatric Pulmonology

Pediatric ENT Specialists

Pediatric Cardiologists

Call them and ask them if they and the facility that they work with would be willing to donate the care for a 4 month old from Haiti who will probably die if she doesn't get the care that's only available outside of Haiti.

If there is any interest in it, call me at (616) 884-8901 and let's talk about what is needed to get things done.

Okay, that's a lot of information packed into one quick post. Read it through, say a prayer for Sonia (and Susan and Dixie) and then ask yourself - who do you know who can help us save Sonia's life?

Let me know what you come up with.

Thanks in advance for your concern for Sonia.

Tom

Posted on Wed, January 19, 2011 by TomVanderwell

49 comments (Add your own)

1. Jennifer wrote:: Always reading what you write and praying for the children of Haiti. Jerrensia was the first child I prayed for specifically by name. How does a person become a host parent? Do we have to already have paperwork filled out. I would love to help Sonia but am not sure where to start. If you have a chance, any information would be great. My email is momtoboys123@yahoo.com. Thanks, Jennifer from CA
Wed, January 19, 2011 @ 4:26 PM
2. Tina wrote:: I just forwrded this to my sons pediatric cardiologist. I will let you know what I hear. Tina
Wed, January 19, 2011 @ 4:33 PM
3. Michele wrote:: As always, my family and I will pray for everyone in Haiti. I will send this to people I know in the medical field. Stay strong. Respectfully, Michele from New Orleans
Wed, January 19, 2011 @ 4:34 PM
4. Karoline Robbins wrote:: Another supporter in CA eager to help. I too am interested in the process to become a host family. We are willing to move fast if it would hlp at all in this situation, although I suspect that there will be someone who steps forward who is immediately ready to host Sonia. We are in the San Francisco area, obviously there are amazing medical facilities here which do a lot of work of this nature. Stanford's Lucille Packard takes many cases from abroad. I will forward your message far and wide, and please contact me if there is anything we can do. Again, other than not being paperwork ready, we are certainly set up and equipped to help Sonia however it is needed. Warmly, Karoline - karoline@greatstrides.com
Wed, January 19, 2011 @ 4:35 PM
5. Brenda Niles wrote:: Tom, Dixie, and staff! I continually pray for you and for the children you serve. I have asked GOD to guide someone to help Sonia if that be his will. I can only offer prayer at this time, but I am glad to get these emails and contribute what I can by asking GOD to assist and bring help! GOD Bless you all!
Wed, January 19, 2011 @ 4:44 PM
6. Rachel DeKuiper wrote:: I just printed Sonia's information. I have an appointment with daughter's ENT tomorrow and will bring the information with me and beg for help. Already praying for Sonia and will call after tomorrow's appointment, Rachel
Wed, January 19, 2011 @ 4:57 PM
7. Zamia Baerga wrote:: Hi, I am from Puerto Rico and we have an excellent cardiovascular center here, I am willing to help as a host family, please let me know if we need to collect money. zbaerga@gmail.com
Wed, January 19, 2011 @ 5:16 PM
8. TomVanderwell wrote:: Zamia - I know absolutely nothing about the medical visa process to Puerto Rico - can you make some contacts there and find out if they are willing to donate care and I'll see what I can find out on the visa process? E-mail me when you know more. Thanks! Tom
Wed, January 19, 2011 @ 5:23 PM
9. Jessica Westerfield wrote:: My husband and I are from Omaha. We have an amazing Children's Hospital here which donates medical services to children in need of foreign countries. I contacted them today to see if they would be willing to help Sonia. I will let you know as soon as I find out.
Wed, January 19, 2011 @ 5:29 PM
10. Carla wrote:: I have emailed 2 major medical facilities - I don't know them, but am just praying that they have a heart for Haiti and for God ... Keep us informed. Sonia will remain in my prayers.
Wed, January 19, 2011 @ 5:30 PM
11. Jamie Bickel wrote:: Hello I am in the medical field and am currently at a Children's Hospital. If I had more information I would love to present it to this hospital as well as physicians/cardiologist/surgeons to see if we can get care to this little sweetheart donated. I also have a friend who is a foster parent and willing to take this little girl into her home so she can receive the care that is needed. I would LOVE to help in anyway. Please contact me at jamieb3035@live.com. Thanks and best of luck to sweet little Sonia
Wed, January 19, 2011 @ 5:41 PM
12. DeLynn Unema wrote:: From a friend of mine, DeVos Childrens Hospital in Grand Rapids Michigan has helped children like Sonia before, a contact would be Gwen Fosse through Heal the Children. I know they have helped kids from the Dominican before. I dont have any more contact that this info at this time. If you would like me to pursue this further, please contact me. I would be more than willing to try to make some connections here. Praying for Sonia and all involved. Praying for a miracle for her and all of you!! with Love, DeLynn
Wed, January 19, 2011 @ 5:56 PM
13. Marjorie wrote:: Would you be willing to look into care in Canada? I may have a connection.
Wed, January 19, 2011 @ 6:07 PM
14. vanesa wrote:: Clamo al Señor por un milagro para Sonia y todos ustedes.Es todo lo que puedo hacer para ayudar por el momento.Y sabemos que la oracion eficaz del justo puede mucho...me gustaria informarme mas acerca de la adopcion internacional.Bendiciones para todos ustedes.
Wed, January 19, 2011 @ 6:08 PM
15. Katie Gartner wrote:: Hello! Found your website from a friend. I am a licensed foster parent who specialized in care for medically fragile children. I actually have a foster child who is a mirror image of Sonia's condition and I'm happy to report my foster child is thriving and has been the past 4 years she has been with us. The medical teams here in MN are top in the nation and I would happy to look for an organization to sponsor Sonia. Contact me and let me know if you need my assistance. My prayers are with GLA and all who donate their time and treasures to these children.
Wed, January 19, 2011 @ 7:03 PM
16. nichole reasoner wrote:: my heartfelt prayers go out to sonia i will be attending my church this sunday and will get the message out to see if anyone can help live near the barbara bush's childrens hospital in portland maine.
Wed, January 19, 2011 @ 7:05 PM
17. Ann wrote:: Praying for Sonja! and Aways Praying for All the Kids and Staff at GLA!!!
Wed, January 19, 2011 @ 7:08 PM
18. Cathryn Peterson wrote:: I am contacting my ENT at Janet Weiss Children's hospital in Danville tomarrow. What would we need to do to host her? Please email us info. Praying for Sonia and you all.
Wed, January 19, 2011 @ 7:09 PM
19. Stephanie Spangler wrote:: I contacted two children's hospitals near me here in Orlando, Florida - Nemours and FL Hospital for Children. They will contact me in the morning about whether or not they will donate their services. They both have respiratory and ENT specialists. They are also checking on the possibility of bringing in a cardiologist.
Wed, January 19, 2011 @ 7:17 PM
20. Melinda Abbott wrote:: I will also print this information and forward to my ENT doctor in Grand Rapids. I have surgery with him in 5 days.
Wed, January 19, 2011 @ 7:17 PM
21. TomVanderwell wrote:: Cool! Thanks Stephanie!
Wed, January 19, 2011 @ 7:18 PM
22. TomVanderwell wrote:: Cathryn - I'm not on my "work" computer - but I'll forward the info to you later tonight..... Thanks!
Wed, January 19, 2011 @ 7:19 PM
23. TomVanderwell wrote:: Katie - we have a LOT of people looking literally all over, but no one has stepped up and said, "We have the medical care lined up yet." So, we're still working on it.... Tom
Wed, January 19, 2011 @ 7:20 PM
24. TomVanderwell wrote:: Marjorie - from what I understand, a medical visa to Canada might take longer than what Sonia has, so we're going to look at that option but we really want to get her to the states instead. The process moves a bit faster here. Does that make sense? Tom
Wed, January 19, 2011 @ 7:22 PM
25. TomVanderwell wrote:: I will definitely keep things updated here. Thanks!
Wed, January 19, 2011 @ 7:23 PM
26. TomVanderwell wrote:: Jessica - thank you! We are getting an amazing number of people looking and working on it. Nothing has been finalized yet, but I'm confident that it will. God is good! All the time!
Wed, January 19, 2011 @ 7:24 PM
27. elissa wrote:: Oh My!! It sure isn't has easy has a phone call to line something like this up:) I will push forward until I hear "Hooray Sonia has been helped" It is a little frustrating though I have called to VERY top notch hospital here and both know of no direct program that deals with these types of cases... called my son's ENT and I will hope he feels for this little angel and the hospital he is at allows for this type of situation....so much red tape!
Wed, January 19, 2011 @ 8:15 PM
28. Kelly D < :) wrote:: Thanks for the update Tom I am going to ck in with The Children's Hospital in Denver and see if they would be interested in helping. Praying too for all involved esp Dixie and Susan! XO
Wed, January 19, 2011 @ 8:35 PM
29. Kelly D < :) wrote:: FYI this is information about Patent Foramen Ovale from Google Health:) https://health.google.com/health/ref/Patent+foramen+ovale
Wed, January 19, 2011 @ 8:39 PM
30. Andrea E wrote:: Praying for Sonia and the caregivers God will bring into her life.
Wed, January 19, 2011 @ 8:41 PM
31. Therese Long wrote:: University of Michigan's is ranked #4 in the whole nation for Pediatric Cardiology and I am relatively confident they would take this case. The only others I would recommend given the complexity of this little girls care are Children's Hospital in Boston, Children's Hospital in Philadelphia and Texas Children's Hospital or John Hopkins, but that one may be harder to get into. They are the top in the nation for these areas. I am in Michigan, have connections there and would facilitate anything needed for Sonia's easy transition to U of M. Let me know what you need to get the medical VISA from U of Michigan and I can be sure to get it for you.
Wed, January 19, 2011 @ 9:07 PM
32. Ruth-Anne Belch wrote:: I have worked for Helen DeVos Children's Hospital for many years. We often work with the organization Healing the Children. We have helped many children from Haiti. Here is the contact information for the Michigan/Ohio chapter. Perhaps she can be of some assistance or direction for helping this sweet little one. Please let me know if there is anything else you think I can do to help. Contact: Helen Salan, Director Address: 2140 44th Street SE, Ste 204, Grand Rapids, MI 49508 Phone: (616) 281-6972 Fax: (616) 281-6973
Wed, January 19, 2011 @ 9:51 PM
33. Katie wrote:: I do not have direct connections but a friend of mine just adopted a son through Reese's Rainbow. They are a ministry that deals only with international orphans and children who have down syndrome. They may be able to help you connect with someone in the U.S. sooner rather than later that speacializes in the conditions being faced by Sonia. I will continue to pray for Sonia.
Wed, January 19, 2011 @ 11:21 PM
34. TomVanderwell wrote:: Ruth Anne - I just e-mailed you separately. Thanks! Tom
Thu, January 20, 2011 @ 12:13 AM
35. Gretchen wrote:: praying
Thu, January 20, 2011 @ 1:05 AM
36. Gretchen Thibaullt wrote:: Might have some Mayo Clinic connections, and people interested in adopting from Haiti. Contact me when you can. Left you a message as well. We have been to Haiti in March, since adopted a little one with DS elsewhere, know many in process of Haiti adoption.... Would like to talk.
Thu, January 20, 2011 @ 10:12 AM
37. TomVanderwell wrote:: Gretchen - I was on the phone when you called. I've got 15 voice mails waiting for me - I'll be in touch as soon as I can...... Thanks! Tom
Thu, January 20, 2011 @ 10:14 AM
38. Gretchen Thibaullt wrote:: Is there a way to get the echocardiogram asap for approval in Mayo? That is a crucial part of their decision---seeing that. Let me know ASAP as my connection to mayo says we need that.
Thu, January 20, 2011 @ 10:30 AM
39. Dana wrote:: I am a pediatric ER nurse. I will reach out to as many staff as possible. The staff and Sonia r in my prayers.
Thu, January 20, 2011 @ 10:46 AM
40. Allison Kelly wrote:: Tom, I just e-mailed the Chief Nursing Officer at Nationwide Children's Hospital in Columbus, OH to see what I can find out. I work there and all of the specialties that Sonia needs are available there, and then some! Will let you know what I find out!
Thu, January 20, 2011 @ 10:47 AM
41. Gretchen Thibaullt wrote:: cell 612-751-3794
Thu, January 20, 2011 @ 11:02 AM
42. Anthony wrote:: Hi Tom- I am in Boston and work as a research fellow at Mass General Hospital. Boston Children's is a possibility. I would like to look into it but I don't want to be over redundant in effort, so please at your leisure let me know if at this point if I should pursue. There are a bunch of people that seem to be doing great working on getting Sonia the proper help. Gretchen, Hi, my wife and I are curious about the process you underwent to adopt. Could you possibly at your leisure shoot me an email sometime about the process? thanks so much, prayers and His Blessings, Tony
Thu, January 20, 2011 @ 11:04 AM
43. TomVanderwell wrote:: Tony, Thank you so much for being willing to help. We have a potential host family who has a lot of experience working with medical cases like this who is talking to her contacts at Boston Childrens and also Mass General, so I think we're good on that for now. Thank you also for being sensitive to the need to not duplicate efforts. Multiple contacts by different people for the same child can frustrate and confuse hospitals and that isn't conducive to getting them to donate services. Keep in touch and thank you for your support! Tom
Thu, January 20, 2011 @ 12:04 PM
44. Rebecca Baptiste wrote:: Tom, I replied privately ;)
Thu, January 20, 2011 @ 12:41 PM
45. Bonnie Wilkins wrote:: http://www.samaritanspurse.org/index.php/Who_We_Are/Contact_Us Dixie, I am Joe and Jill Wilkins little son, Samuel Chancelet Wilkins other grandma. I received the above information in response to a prayer request I put out. It just said to have you contact these people, it is Franklin Grahams group who they say works nonstop for Haiti. God Bless you in your work and God Bless little Sonia.
Thu, January 20, 2011 @ 6:32 PM
46. Gretchen Thibaullt wrote:: Anthony, Would LOVE to tell you about our process of adopting a child with Down syndrome! I don't know how to contact you via email....
Fri, January 21, 2011 @ 1:42 AM
47. Stephanie Spangler wrote:: Talked to both children's hospitals in Orlando, FL, yesterday. One is considering and the other is still in the "checking-to-see" stage. They both want to know whether Dixie will provide transport to Orlando or whether other arrangements need to be made. Pls let me know asap. Stephanie Volunteer, HALO (Helping and Loving Orphans)stephaniespangler@hotmail.com Phone: 352-259-4070
Fri, January 21, 2011 @ 12:01 PM
48. Stephanie Spangler wrote:: FYI - Should Sonia's care end up taking place in Orlando, FL, we are willing and able to be a host family to Sonia - or any other Little Angel for that matter. Pls let us know how to qualify as a host family. Stephanie Spangler Volunteer, HALO - Helping and Loving Orphans stephaniespangler@hotmail.com
Fri, January 21, 2011 @ 12:11 PM
49. >Sonia and the Urgent Medical Visa Needs | KD'S Korner wrote:: [...] >Sonia and the Urgent Medical Visa Needs [...]
Wed, February 9, 2011 @ 8:30 PM

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