This document discusses two families seeking cord blood storage for children with sickle cell disease. Family 1 has two children with sickle cell disease and is interested in preimplantation genetic diagnosis but it is unavailable. Family 2 has two children with severe sickle cell disease complications who could benefit from cord blood transplant. Both families were referred for cord blood storage but their local primary care trusts declined based on existing policies. This highlights the need for a national policy on cord blood storage access for families with children suffering from sickle cell disease.
This document discusses two families seeking cord blood storage for children with sickle cell disease. Family 1 has two children with sickle cell disease and is interested in preimplantation genetic diagnosis but it is unavailable. Family 2 has two children with severe sickle cell disease complications who could benefit from cord blood transplant. Both families were referred for cord blood storage but their local primary care trusts declined based on existing policies. This highlights the need for a national policy on cord blood storage access for families with children suffering from sickle cell disease.
This document discusses two families seeking cord blood storage for children with sickle cell disease. Family 1 has two children with sickle cell disease and is interested in preimplantation genetic diagnosis but it is unavailable. Family 2 has two children with severe sickle cell disease complications who could benefit from cord blood transplant. Both families were referred for cord blood storage but their local primary care trusts declined based on existing policies. This highlights the need for a national policy on cord blood storage access for families with children suffering from sickle cell disease.
This document discusses two families seeking cord blood storage for children with sickle cell disease. Family 1 has two children with sickle cell disease and is interested in preimplantation genetic diagnosis but it is unavailable. Family 2 has two children with severe sickle cell disease complications who could benefit from cord blood transplant. Both families were referred for cord blood storage but their local primary care trusts declined based on existing policies. This highlights the need for a national policy on cord blood storage access for families with children suffering from sickle cell disease.
1st Acute Chest syndrome At 6 developed abnormal TCD now transfused Interested PGD but unavailable 3rd preg-Prenatal- non sickle Requested to have cord blood storage Cord Blood storage Family2 2 children with HbSS, 3rd HbAS
1st Child with multiple complications, initially
transfused
2nd Child with abnormal TCDs-declines transfusion
as 1st developed ab on tx
Family tissue typing-haplotype mismatch for both
SCD
Family not eligible for funded PGD
Cord Blood storage Family2- 1st Child Severe anaemia @16 days, Pneumococcal sepsis at 4, with multi-organ disorders (+Cardiomyopathy),
morixella Osteomyelitis at 6,
Rosai-Dorfman Disease at 7
Abnormal antibodies- Lower steady state Hb-5.5-6.5
@8
TRJet velocity- >4m/sec@10
Rosai-Dorfman Disease: A previously unreported association with Sickle Cell Disease Stebbing, van der Walt, Ramadan and Inusa. . BMC Clinical Pathology 2007, 7:3 doi:10.1186/1472-6890-7-3 Rosai-Dorfman Disease: A previously unreported association with Sickle Cell Disease Both Families Family1- referred to GP SIDCUP and Haematologists GP presented to PCT/ Haematologist uncertain about indication Mother contacted other parents Options- Move to ‘correct’ postcode/ private arrangement Family 2 Referred to Obstetrician and GP (Lewisham) Outcomes PCT-declines as the case is not supported by GSTFT policy Obstetrician-who takes lead-Paeds or Haematology GSTFT panel to review policy- NEXT!!