**Sonya Update 07-02-11**
As per Tatyana I wanted to update those of you following this story on little Sonya.
On June 20th, Sonya was taken to a children’s hospital in Dnepropetrovsk with another life threatening bleed from the varices in her esophogas. A few days later Tatyana updated me again to say that Sonya was still critical and of course very weak. Lastly on the 29th I received much better news that Sonya was better, still very weak, but that her Hb was low.
On a more positive note overall is that they have most of the funds in place now to make the long journey to the US for treatment, but will need to recover enough to survive the long trip. Tatyana is to apply for visa this week, and hopefully will receive a visa without any problems. She is hoping to be in Chicago at the clinic in the middle of July?
Tatyana has asked for continued prayer for Sonya’s condition, and for the visa to be approved. I’ll keep you posted … Clint
NEW UPDATE 06-13-11 (Latest Update on Sonya)
It’s been a little over a month since the last update, and still we play the waiting game for Sonya. They have been back home in the Ukraine for a few week’s now, and have only recently received word from Children’s Memorial Hospital in Chicago as to what to expect regarding a possible Rex Shunt for Sonya. Dr. Superina had reviewed the results from the tests in Germany, and he is of the strong opinion that a Rex Shunt is still the best option for Sonya – contrary to what doctors in Germany told Tatyana. Doctor’s in Germany recommended an arterial embolization on Sonya, of which both Tatyana and apparently Dr. Superina did not favor. (Up to this point I was not familiar with this procedure and after a thorough search I was able to locate the link above which I thought explains the procedure in the easiest terms).
Not only were the expectations regarding the procedure outlined in the letter, but the costs were also highlighted. A recommendation was made by Dr. Superina that Tatyana consider applying for a 5 year visa to the US, as Sonya would need subsequent follow-up visits for awhile after an operation of this kind. As you can imagine the costs for a procedure of this nature is very high, and considering the costs to travel from the Ukraine to the US it adds even further depth to those costs. Despite this Tatyana is not deterred in her mission to get the help she needs for little Sonya.
Financially this is a HUGE undertaking and after learning of the costs via Tatyana last week, my heart sank for them. My natural response to any huge hurdle in life is to think the worst, but after mulling this over in my mind, I return to the faith I have in God who I believe is much bigger than all of this. To that end, I continue to uphold this little girl and her family in my prayers. For those of you who are also praying and thinking of them, I thank you for your faithfulness. Lastly I want to personally thank those who have offered to help Tatyana in practical ways, if she ever was to go to the US with Sonya for a operation of this sort.
I’ll keep you updated on any new developments. Thanks to all of you for caring!
Faith is like radar that sees through the fog-the reality of things at a distance that the human eye cannot see.
Earlier today I received a message from Tatyana (Little Sonya’s Mom) regarding the latest on her little girls condition. Due to the generosity of a donor in the Ukraine, Tatyana was able to take Sonya to Germany this past April 27th for testing and possible treatment for her Portal Vein Thrombosis.
Here are the details in Tatyana’s own words …
“As you know, we arrived at the KUNO clinic (part of the University Hospital in Regensberg Germany) on April, 27th. I was so happy and my heart was full of hope. The investigations started with the ultrasound and Dr.Knoppke said that it looks like the left lobe of liver has blood perfusion, so it might be the left portal vein that is unclotted. I was so happy to hear that!
On Tuesday she had MRI and also a gastroscopy. The doctors said that her varices look much better than a month ago and there is no danger of bleeding right now. The MRI was not really so informative so they needed to do CT with contrasting. The CT scan was done last Friday. Sonya had to be intubated twice, and under 3-hours general aesthesia, she received twice the high dose of X-ray radiation. After this entire ordeal doctor’s are still not sure how to proceed! Now they want to do an angiography, which is invasive. In order to do an angiogram doctors will open her femoral artery and use a catheter to proceed into the mesenteric artery. When in the artery they will release contrast to trace a path of where the blood is going. One cannot stress enough the danger involved in this type of procedure!
I didn’t have the opportunity to talk to the surgeon personally, but our doctor said that he does not think that Rex-shunt is possible for my daughter, because she has only collateral vessels. I feel so disappointed now, I really don’t know what to do?
I was reading your blog and almost made a decision to look for other surgeon who would say that the Rex-shunt IS POSSIBLE. Only the Rex-shunt is healing operation, other types of porto-systemic anatomises will only reduce the pressure in the portal system which causes bleedings. I do not only want her life to be saved, but I also want to save the quality of her future life.
So now I want to have a discussion regarding this problem with Prof. Shlitt, and at that point I will have to make a decision to either sign or not sign an agreement to have the angiography. Also I want to get a second opinion as well. I have decided to make a short summary of her case and all the recent investigations and send that information to doctors in USA who perform the Rex-shunt operation in children. If even one of them will say ”yes, I’ll do that”, then we will come back home and do everything possible and impossible to receive a new visa, and to collect the needed funds. I’m ready to go to the happy end of the story, to overcome all of the trials on that way. I want to see Sophia happy and healthy, she is worthy of that.
Please continue to pray for my girl and for the correct decision. The best would be to have the Rex-shunt procedure performed over here, but if the surgeon says ”no’, I’ll have to find another place in the world and another surgeon … I pray that would be Dr. Superina himself
Original Post 04-14-11
It’s with a sense of urgency today that I bring you the story of a little girl in Zaporozhye, Ukraine by the name of Sonya Danilenko (see below). Sonya is only 14 month’s old and has been diagnosed with Portal Vein Thrombosis (PVT) and a heart defect called pulmonary stenosis. Her Mom Tatyana located this blog last week and was seeking to contact a doctor outside of the Ukraine who had previously performed the Rex Shunt procedure.
Sonya was adopted in the Ukraine just over 4 months ago by the Danilenko family (see below), and oblivious to them at time of her adoption this condition revealed itself only a few months after (February) when she had serious bleed (see: esophogeal varices). Subsequently she has had 4 bleeds to date losing over half of her blood volume and she almost lost her life on March 31st. Added to the urgency of the situation, she has obstructive bronchitis with a breathing insufficiency. If she coughs it could open up another varice and her condition will decline even further.
Tatyana is an emergency doctor herself, and her understanding of Sonya’s condition is excellent. Unfortunately no one in the Ukraine is able to perform the Rex Shunt procedure, however Tatyana was able to locate a doctor at the University of Regensburg, Germany by the name of Dr. Birgit Knoppke who may be able help her. Dr. Knoppke says that this kind of shunt is of course preferable, but can only be performed if the left branch of the portal vien in the left lobe of liver is not clotted. If they find the thrombosis in that left branch, as well as in the extra-hepatic part of the portal vien, that kind of shunt is impossible to perform and they will then consider a meso-caval or another kind of anastomosis. If those options are not feasible, she will be faced to endure encephalopathy with behavioral or mental problems with heart insufficiency and other future problems.
So as you can see Sonya is a little girl who is very ill. Tatyana told me Sonya has to be stable before she is able to make the trip to Germany. As per an email Tatyana sent yesterday she relayed the following, “My privilege in this situation is first of all my faith in God, then a MD degree in medicine with the understanding of the problem and then no language barrier, I can discuss all of the details of treatment with doctor’s there”. Fortunately they have raised the necessary funds through the gifts of some generous donors, so that is one thing less to be concerned about. They are currently in the process of getting their passports and visas to make ready the trip.
The Danilenko family has 8 children in total, 3 are their own, and 5 are adopted including little Sonya. I promised Tatyana that I would pray for Sonya, and their family at this time. I told her I would also ask others to “stand in the gap” for them by praying for Sonya at this critical time. Although I have never met Tatyana in person, I feel I know them by the few messages she has relayed. They have a tremendous heart for children. In Tatyana’s own words she says, “I believe in the Lord Jesus Christ and serve Him by adopting orphans into family, loving them as my own children and telling them about the love of a Father”.
Will you also commit to pray for this little girl and her family? Specifically pray that Sonya will be stable enough to make the trip, and Dr. Knoppke in Germany will be able to intervene to save Sonya’s life. Pray for this family as they deal with this situation and that all the “hurdles” that may come their way before they leave will be taken away. I know they will be encouraged by your efforts in this regard. Their faith in the Lord Jesus Christ is sustaining them for most part, however one can’t deny the sense of concern they no doubt have at this time for this precious little gift from God.
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27
Until next time,
Hope Little Sonya is able to get this rare surgery.I’m a grandmother of a child with PVT and to Sonya’s Mother,you hang in there.I will keep Sonya and your family in my thoughts and prayers.
Ella … thank you for your post! Just wanted you to know that I posted an extensive reply to Amy below regarding an update on Sonya. As mentioned in the post I have yet to hear back from Tatyana regarding the latest and unfortunately I missed her call earlier this week. She may be back in the Ukraine after being in Germany for tests on Sonya?
Have we heard any more on how this family is doing as they journey to getting answers and the medical solutions that their little girl needs? I am also a mom in search of getting my son the medical attention and possible REX SHUNT surgery and am so thankful that we have doctors here in the United States that are within our means to be able to access. We are headed to Chicago on June 3rd to meet with Dr. Superina and are hoping that we are able to get the answers that we are needing. I will keep little Sonya in my thoughts and prayers as well as her adopted family. We all have the common goal of finding a solution to this medical condition so that our children can become healthy and strong and live long HAPPY lives, free of pain and hurt.
Hi Amy, Thanks for your valued comment! Sorry to hear of your son’s condition – I never like hearing about anyone having this condition and especially little ones, but there is hope out there and you are going to the right place!!
I spoke with Tatyana on the phone last Friday and at that time the doctor’s in Germany had just completed a angiograph on Sonya. The doctor’s there recommended a Embolism treatment to clot Sonya’s spleen off in hopes it would take the pressure off the varices in her Esophogas and stomach. Tatyana is not in agreement with this, as this is what they would have done in the Ukraine – as that seems to be one of the only treatment options they can perform there because they do not have the specialized training that Dr. Superina and a few other doctors in the world currently have. Tatyana by the way has a very good understanding of the medical treatments as she herself is a emergency physician in the Ukraine. Tatyana was able to speak with Dr. Superina’s nurse (also called Amy) and they are not recommending the embolism treatment either. Tatyana was to send the results of the tests via courier to Chicago and Dr. Superina was to review the case, but I have not heard from her yet as to the next step. I missed her call on Monday, but am hoping to catch up with her soon as I am anxious to hear what transpired. She likely would have gone back to the Ukraine as it would be awhile before she could arrange the trip -which is quite an ordeal from there to the US.
I also had the privilege of speaking with Dr. Superina’s nurse last week regarding Sonya, and she said that Dr. Superina had been over in the Ukraine a few years ago for a visit in hopes that he could train someone to do the procedure and help the children from that country. Amy told me that there seems to be a correlation between the embilical cord and the portal vein and when a child is born prematurely with an infection in the cord, portal hypertension is more common. Amy told me that when Dr. Superina visited a hospital over there that there were 40 kids who had this condition. Interesting informaton to say the least! As far as us adults are concerned the options are very limited because of atrophy of the arteries due to portal hypertension over a long period of time.
Hope this is helpful? Please keep me posted on whatever happens on the visit? If you need someone to dialogue with who has been there with thier own child – I can put you in touch with her as she is on the parent’s advisory for the Rex Shunt procedure right in the Chicago area.
Thoughts and prayer now for your little and you as you look for answers!
My heart hurts for that family. Clint, I know you don’t know me, but you can verify my sanity by calling Amy Bouvy, who knows us quite well. I said in a previous email that we live an hour outside of Chicago, so if Tatyana and Sonya can get to the U.S., they have to place to stay as long as they need it. I can offer them whatever they need in addition to that- rides, food, whatever.
Thanks for your comments Kelly … these are always appreciated! Most of all your offer to help for Tatyana and Sonya – that is truly awesome! I spoke with Tatyana the other day on the phone from the Ukraine, and if she has not checked the blog I will extend your offer.
Have been thinking and praying for Little Sonya and her family that with faith and the help of others that they will be able to come to the US and receive the medical care/surgery necessary to help her. It is sounding like this may soon be a reality and for this I am so THANKFUL!
Dr. Superina is a very intelligent and skilled surgeon. After meeting with him personally on June 3rd, we have decided that we will also be traveling to Chicago in order to have him perform our Alex’s surgery. We are scheduled to be in Chicago on September 13th and his surgery is scheduled on September 14th. Please keep all of us in your thoughts and prayers as we journey together to get our children the help that they require to get better. It is amazing how we have all come together to support each other and to give each other the faith that is needed to get through these difficult times. It is with our most precious gifts, our children, that we have this commonality. How I wish that we did not have to meet in this way, but I am so appreciative for all of the help and support that has been shared!! Thank-you to all!! Amy, Alex and Family
Thanks for your kind words of encouragement – not to mention your prayers for Sonya and her family. Not only is Sonya in the forefront of our prayers, but I know it to be true for Alex as he approaches his surgery in September.
I’ve said this before on this blog but I never could have imagined all the dialogue that has happened here this past 1 1/2 years concerning what Dr. Superina has done and is doing in Chicago for these children. You are right … he is a very intelligent and skilled surgeon and there are many kids (I think well over 120 to be exact) who are living proof he is what he is.
I’m waiting for a return message from Tatyana (Sonya’s mom) regarding a possible shortfall in funds required for this surgery. Although we personally do not have the funds to help Sonya or any others for that matter, I have proposed to set up a page where they may be able to make up the shortfall. Being out of country as they are (ourselves included) it is a challenge to try to figure this out but I think I might have a way? I am mindful of the fact that there are others who also may be in this position and from what I have learned there have been talks in the past of setting up some sort of foundation. The idea was conceived by a few Moms of children, who have already had the Rex Shunt, but I do not know where they are at in the process, or if in fact it will happen at all?
We will definitely keep Alex and your family in our thoughts and prayers as you approach the operation and beyond! Please keep us informed if there are any changes before the operation, and of course after the surgery.
Blessings to you all,
Clint and family