ULTRASOUND Messages for May, 2005: Twin Transfusion Laser Therapy successful at Brown

Twin Transfusion Laser Therapy successful at Brown
From: James Smeltzer (James.Smeltzer@wellstar.org)
Fri May 13 09:41:27 2005

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Hi,
I want to thank you all for the wonderful help I received in this case. The Franciscans at St. Joseph in Tampa wanted $16,700 cash up front to see the patient. Both she and her husband are students and this was not possible. I did not believe that it would be ethical to randomize her to amniocentesis as the recipient was headed rapidly into heart failure, so the NIH trial was out.
Francois Luks and the group and hospitals at Brown (in Providence RI) would see her and treat her first and hassle with Medicaid about payment after, so I sent her there. The patient could not afford air fare so they drove to RI - a 14 hour drive if you miss rush hours in DC and NYC. They arrived in the evening of the 2d day, were treated that night and are recovering. The procedure was technically difficult because the anastomotic vessels were in a folded area of the placenta that Dr. Luks opened up by amnioinfusing the recipient.
I have received daily status reports. If I have another good candidate, I will call Dr. Luks at Brown or his coordinator, Charlene (Pager 401-452-4469).
Most state Medicaid plans have provisions for prior approval of out-of-state care. Terry Sroufe at the Georgia Medical Care foundation was very helpful in getting this done in an hour. I am including my pre-cert letter here to help others who need to modify it and use it for their own.
Again thank you for your help and for your prayers. Thank you Dr. Francois Luks and all the others at Brown for your life saving therapy.
Jim Smeltzer
Letter: To Whom it May Concern Medicaid Services Department of Community Health Attn: Dear Persons: It is my honor to care for one of your clients, C***) She is pregnant with identical twins who share a placenta. She is now *** weeks pregnant. These twins are in trouble. They have a problem known as twin transfusion syndrome. The donor twin is severely anemic and sending extra blood to her brain to survive. The recipient twin is in heart failure from excess blood and red cells. When I saw C*** yesterday this had worsened over the last four days. Both babies are in danger of death, brain damage and lifetime impairment from this problem if it is not treated immediately. The best treatment for this problem is laser ablation of the communicating vessels in the placenta from inside the pregnant uterus. This was established to be best by a randomized clinical trial published in the New England Journal of Medicine (Endoscopic laser surgery versus serial amnioreduction for severe twin-to-twin transfusion syndrome. Senat MV, Deprest J, Boulvain M, Paupe A, Winer N, Ville Y. N Engl J Med. 2004 Jul 8;351(2):136-44. Epub 2004 Jul 6. PMID: 15238624). A multicenter NIH funded US trial of the same treatment is now led by Dr. T Crombleholme at Ohio State. Dr. Crombleholme agreed with me today that it would not be ethical to withhold laser treatment from Claudia, and that she could not be randomized in that study. As an expert in prenatal diagnosis and management of this problem, I certify: 1. This is a life threatening condition. 2. It requires immediate emergency treatment for the best chance of a good outcome. 3. The best treatment is laser ablation of the blood vessels by which blood is shared between the two twins. 4. There is no facility in Georgia with significant experience and expertise in performing this procedure. 5. Dr. Francois Luks at Brown University and Dr. Stephen Carr, also at Brown University have that experience and ability, and participated in the study that proved the superiority of this treatment. 6. I am referring your client to them for this potentially life-saving treatment now. 7. I am requesting prior authorization for that treatment, and necessary ancillary hospital services and Women and Infant's Hospital, Providence Hospital and others involved in this care team. 8. I anticipate that follow-up care can occur here by me and at Kennestone Hospital after stabilization and recovery. http://bms.brown.edu/pedisurg/Fetal/TTTSResearch.html
I have attached relevant references and the results of my testing and consultation with her ***. Thank you for your speedy and compassionate consideration.
Sincerely, James S. Smeltzer, MD
Consultant Maternal Fetal Medicine Wellstar Northwest Women's Care References: 1 Intratwin arteriovenous fistula of the placenta in a case of twin-to-twin transfusion syndrome.
Poch M, Luks FI, Carr SR, De Paepe ME. Am J Perinatol. 2005 Jan;22(1):3-6. PMID: 15668837
2 Antenatal necrotic injury in severe twin-to-twin transfusion syndrome. A case and review.
Carr SR, Luks F, Tracy T, Plevyak M. Fetal Diagn Ther. 2004 Jul-Aug;19(4):370-2. PMID: 15192299
3 Limited prognostic value of a staging system for twin-to-twin transfusion syndrome.
Luks FI, Carr SR, Plevyak M, Craigo SD, Athanassiou A, Ralston SJ, Tracy TF Jr. Fetal Diagn Ther. 2004 May-Jun;19(3):301-4. PMID: 15067245
4 Placental findings after laser ablation of communicating vessels in twin-to-twin transfusion syndrome.
De Paepe ME, Friedman RM, Poch M, Hansen K, Carr SR, Luks FI. Pediatr Dev Pathol. 2004 Mar-Apr;7(2):159-65. Epub 2004 Mar 17. PMID: 15022066
5 Minimal-access fetal surgery for twin-to-twin transfusion syndrome.
Bussey JG, Luks F, Carr SR, Plevyak M, Tracy TF Jr. Surg Endosc. 2004 Jan;18(1):83-6. Epub 2003 Nov 21. PMID: 14625725
6 Renal tubular apoptosis in twin-to-twin transfusion syndrome.
De Paepe ME, Stopa E, Huang C, Hansen K, Luks FI. Pediatr Dev Pathol. 2003 May-Jun;6(3):215-25. Epub 2003 Apr 14. PMID: 12687431
7 Demonstration of placental vascular anatomy in monochorionic twin gestations.
De Paepe ME, Burke S, Luks FI, Pinar H, Singer DB. Pediatr Dev Pathol. 2002 Jan-Feb;5(1):37-44. PMID: 11815867
8 Preoperative planning with magnetic resonance imaging and computerized volume rendering in twin-to-twin transfusion syndrome.
Luks FI, Carr SR, Ponte B, Rogg JM, Tracy TF Jr. Am J Obstet Gynecol. 2001 Jul;185(1):216-9. PMID: 11483931
9 Intestinal atresia associated with twin-twin transfusion syndrome.
Luks FI, Carr SR, Tracy TF Jr. J Pediatr Surg. 2001 Jul;36(7):1105-6. No abstract available. PMID: 11431792

-- James S. Smeltzer, MD, FACOG, SMFM Consultant, Maternal Fetal Medicine Wellstar Physicians' Group Northwest Women's Care 787 Campbell Hill St Marietta GA 30060 James.Smeltzer@wellstar.org VM 678-290-3035 Off 770-528-0260 Page 404-318-3451
>>> "Luks, Francois" <Francois_Luks@brown.edu> 5/12/2005 11:33:41 PM >>>
Little update: so far, so good - Claudia is now in the Ronald McDonald House and doing very well. The donor hasn't changed - still doing well. The recipient no longer has MR or a pericardial effusion; therer are now stretches of normal umbilical blood flow (although it is still intermittently pulsatile, and TR is still present), and the ascites may have decreased in volume. There is also markedly more fluid around the donor.
As we keep repeating to them, it is by no means a guaranteed victory - but the signs are as good as we could have hoped for at this point (postop day 2).
We'll keep you posted, of course.
Francois
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Previous message: James Smeltzer: "Re: TTTS"
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