Our child was born with trisomy 21 that had gone undiscovered.

And all of a sudden, the world comes to a halt.

Opinions are divided about the options for fine diagnostics that are offered during pregnancy. Some parents want to know if the child in their womb is perfectly healthy, while others don't want to stress themselves or their pregnancy and prefer to accept their child as is. It's a sensitive subject that every pregnant woman has to deal with. 

"We would like to encourage all of you to discuss this matter with your partner at the start of your pregnancy." 

I immediately noticed that something was wrong

“I instantly realized something was wrong as the midwife and doctor there were visibly concerned, but they tried their best not to show it when they handed us our baby shortly after the birth.
For a brief while, I believed that my confusion stemmed from the exertion of the previous few hours, but it was plain to me when I first saw our child: our little Nicklas appears to have Down syndrome.


A few minutes later, I expressed my concern, as if that would stop it.
The much-anticipated "No, everything is OK" did not materialize.
"The pediatrician has been informed, and Nicklas will be seen again," said the gynecologist.
Daniel and I felt helpless because we weren't prepared for this situation. "

 


 

During her pregnancy, she and her husband declined to do any diagnostic testing.

They wished to accept their child in the form that nature intended. She was in her late 30s when she spontaneously fell pregnant for the first time (pregnancy becomes risky beyond 35). She tells me about her unrestricted and endless love for her child, while also discussing her emotional stress and the moment she realized and regretted that she and her husband had made the deliberate decision not to perform fine diagnostics, such as neck fold measurements or the new harmony test (the child's DNA can be analyzed via the maternal blood and screened for trisomy 21, 18 and 13 as well as a disorder of the sex chromosomes and DiGeorge syndrome).

We just wanted to look forward to having our child

“We knew I was at a higher risk because of my age, but we hoped that it would not affect us. We did not want to face the whole process of a possible positive result with the neckfold measurement and then further diagnostics through amniotic fluid puncture and everything that follows after that. We wanted to be happy and protect Nicklas and ourselves from possible negative emotions. We didn't want to be given the opportunity to consciously decide for or against him and to worry about the future of a child who hasn't even seen the light of day.We didn't want to ask ourselves who will take care of our child if we are no longer alive before they have even taken their first breath. "

An affected mother recently described these moments to me.

 


 

I understood completely and really empathised with her.


But she also told me that it wasn't the fact that she was affected that made her so sad at the beginning of her motherhood, but rather saying goodbye to her ideas, dreams and wishes for her healthy, unborn child.These honest statements, as well as her present, unreserved, loving, and proud treatment of her 10-month-old Nicklas, have deeply moved me.  She asked me how I see it, whether I think that her decision against fine diagnostics was reckless at her age. I explained to her that it was not my place to make moral judgments. Nicklas has the best parents and the most loving household, and I believe it's wonderful when a child with trisomy 21 is born adored and allowed to grow up loved without any ifs or buts. With an intrauterine diagnosis of trisomy 21, not all parents will go through this. A decision to abort the pregnancy should be respected and not criticized. 

I feel really blessed to have had two healthy children. I was 26 and 28 years old when I opted to have extensive diagnostics done during both pregnancies, knowing that if the results were positive, I would not accept the "final" option, but I wanted to know and have the opportunity to prepare. In the event of a positive result, to envision family life with our child who has trisomy 21, to research support alternatives, and to consider how I can provide our child with a normal life. 

Lucia, a midwife from the beautiful Allgäu says:

"Greetings, future parents!
I'd like to encourage all of you to address this topic with your spouse at the start of your pregnancy, to identify it, and to consider what a positive outcome could mean for you specifically. Try to receive counsel from a doctor with clear information on this topic as soon as possible, because the point of fine diagnostics arises for every pregnant woman around the 12th week of pregnancy."

Sincerely, Lucia