Op deze pagina zijn de ervaringen te lezen van ouders die te maken kregen met aandoeningen van hun ongeboren kind(eren).
A few days earlier, I remember making an update on Facebook complaining about my back being so sore and my stomach feeling quite tight all the time. I had put it off to being twins and pregnant, but of course, we know now that this was a sign of TTS. I was diagnosed with stage 1 TTS, and sent to the LUMC in Leiden the same day. At the LUMC, I was also diagnosed with potentially having TAPS.
It was a confusing and scary time. I had only moved to the Netherlands the year before from Australia, and so my Dutch was not good – and finding good, up to date information online was hard. I saw a few websites, but some looked old and outdated. Others were too technical to read, and many had confusing and conflicting information.
It was an emotional struggle, and the only place I felt I had any clarity on the situation was at the frequent appointments at the LUMC. The team there took time to explain things and make sure that I understood things. It was still scary, and each appointment felt like it brought more bad news. Still, I felt secure, that things were being handled appropriately – and that they were in control. Our TTS resolved without intervention (a rarity!), but the TAPS stayed a constant threat. It remained stable, and the team made sure that we knew what potential issues could arise, including that it may mean that they came earlier.
At 30 weeks, I had an ultrasound that showed some potential complications for my girls, and again, the team acted fast. Within 2 days, my girls were safely delivered and moved to the expertise of the Neonatology team, where they spent another 12 days before being transferred to our local hospital. We felt supported, informed, and well cared for at each step of the journey, down to receiving a call to tell us that each of our girls had left Leiden in the ambulance and were on their way to Almere.
The story of the TAPS twins
Written by Stephanie Ernst-Milner
It all began with an ultrasound.
“Congratulations! Here’s your baby! … and here’s the other one!” Our ultrasound technician was so happy to deliver this news. On the other hand, we were a little shocked, and surprised. No one in our immediate family had twins, so this was huge news.
Our local hospital took charge, and soon we were in a whirlwind of appointments. The doctor explained to us the risks of our pregnancy but reassured us that complications like TTS were rare, so it wasn’t likely we would get them. We felt well cared for, and so things progressed quite well. At least until our 24 week appointment.
As the girls have grown, we’ve been lucky to have the additional support of long term follow-ups as well. We also know that we can call the team or email and ask questions – even though we are now almost eight years into our TAPS diagnosis. This has been an incredible support to us, knowing that we are looked after.
There is a strong need to talk about the complications of twins. In our case, TAPS, but overall for all complications. The excellent care that we received inspired our family to do more. Over the years, I’ve spoken about our story and learned that not everyone gets this same standard of care. This inspired me to create an awareness website for TAPS and eventually channel this passion into creating a Stichting (foundation) for TAPS research (as well as other twin complications.). We now work closely with the team at the LUMC – and it’s all because they took care of us. Together we raise awareness as a team, and break down the barriers of patient/doctor relationships and medical jargon. It’s about making research and experts accessible, which is important within the rare disease community.
Emilie and Mathilde are now happy, healthy girls who love school and swimming and travelling. They have challenges from TAPS and prematurity, with both girls having an autism diagnosis and developmental coordination disorder. Still, they are incredible little girls who have come a long way thanks to amazing support from the LUMC and our local teams.
We will always be thankful to the incredible team at the LUMC who gave us not only the amazing gift of our girls, but also their time, their energy, and their enthusiasm for saving lives. They’re part of our family, and that inspires us to make changes in the world of twins.
Blog: 'Eerste baby in Nederland met Hb Barts'
'Van verloskundige naar Reinier de Graaf Delft, naar Erasmus MC Rotterdam, om uit te komen bij het LUMC. Het kostte heel veel buisjes bloed, MRI scans, een vruchtwaterpunctie, verschillende gynaecologen en echoscopistes voordat de klinisch geneticus ons vertelde dat onze ongeboren baby Hb Barts/Alfa Thalassemie Major heeft. 'De meeste babies overlijden tijdens de zwangerschap of kort na de bevalling. Mocht hij dit wel overleven, zullen diverse organen aangetast worden en het heeft gevolgen voor z'n ontwikkeling.' Die boodschap kregen wij mee naar huis met een doorverwijzing naar de afdeling Hematologie in diezelfde week. Daar begon ons traject met vele afspraken, echo's en intra-uteriene transfusies voordat Joas werd geboren. Lees ons verhaal hier.'