In 1965, the Leiden University Medical Center (LUMC) established the national fetal therapy center in the Netherlands. The main treatment given was in-utero blood transfusions for babies with anemia caused by Rhesus disease. Over the past 56 years, the center has grown, and become recognized internationally as a leading research and innovation center for fetal therapy.
In 2015, they became an EU Center of Expertise for Rare Pregnancy-Related Disorders, and have led several large international clinical trials in this area.
They have created the Northern Alliance with the the Karolinska Institute in Sweden and KU Leuven in Belgium, and the Fetal Care Academy with Sweden, Belgium, and with Mt Sinai Hospital in Toronto, and are integral in petitioning for a European Reference Network for Fetal Therapies, and actively participate in research with international centers.
Innovation and Dedication
Recognized internationally as a leading research center for monochorionic twin pregnancy research, they have produced over 200 peer-reviewed publications and given valuable insights into the diagnosis, treatment, and long-term outcomes for the complications associated with this type of pregnancy.
Since the year 2000, the LUMC has also treated Twin-Twin Transfusion Syndrome (TTTS) with laser surgery, and this is done 24 hours a day, 7 days a week. They are the national referral center for this disease.
In 2006, the team were integral in the naming of a new rare disease – Twin Anemia Polycythemia Sequence (TAPS) and have led the way in creating diagnostic criteria, treatments and researching the pathogenesis and long-term effects of this disease.
The team also developed innovative treatments for TTTS and TAPS, with the Solomon laser technique used worldwide to treat these diseases. In the past 20 years, they have performed over 900 laser surgeries, saving countless lives.
New research is always ongoing, with the center also leading the way in research into Selective Fetal Growth Restriction (SFGR) and Twin Reversed Arterial Perfusion (TRAP), further complications of monochorionic twins. They are recognized internationally as a contemporary, forward-thinking, and world-leading research center.
Long Term Followups
Along with a dedication to in-utero care for twins, long-term follow-ups are also offered to parents with children born with these diseases. Their development is tracked, and used for research and furthering knowledge about the impact of prematurity and the diseases for families.
Patients treated by the LUMC feel that they are part of a family – with personal touches.
They check the understanding of the different complications, explain the treatment options and follow up care is always of the highest standard. They feel reassured by both compassionate care, and the fact that they are given the latest, evidence based treatments.
It’s a family, with connections to researchers and doctors lasting years.
Why support the LUMC Fetal Therapy Team?
Rare disease research is essential – and yet it is often underfunded. The TAPS Support Foundation is raising money to fund a part-time TAPS researcher. Read more about this project here and help rare disease research continue.
The TAPS Support Foundation exists to provide up-to-date information about TAPS and related diseases, as well as support the continuance of research into these. Mart’s epic run will help us put a researcher into place much quicker, and ensure we can get answers for families.