I didn't want to hear the truth about my little baby, didn't want to face it

The 20-week ultrasound started off very calmly

It was January 2014. The holidays had just ended and I was halfway through my pregnancy. We were having a son and today we had the 20-week ultrasound. I wasn't nervous, I was actually looking forward to it. Nice to see our little guy again. As soon as my son appeared on the screen and I heard his heartbeat and saw him moving around happily, I thought: “Oh look, nothing's wrong, he's doing fine.” Feeling a lot more relaxed, I calmly watched the screen while the midwife checked everything. It took quite a while and she didn't really say much, but I didn't mind, it allowed me to watch the lively little guy playing on the monitor for a bit longer.

Until she suddenly said in a serious voice that she saw something that wasn't right

Well, not one thing but two things. She suspected a heart defect and she saw no stool, which could indicate an esophageal abnormality, but she couldn't say for sure. We were referred to an academic hospital for further investigation. Completely overwhelmed, we walked out of the room with an envelope. All sorts of thoughts raced through my head: 'How can this be? Did she see it correctly?'. On the drive home, the tears came and fear overwhelmed me. The worst scenarios went through my head. My husband managed to calm me down a bit and said: 'Maybe it's not as bad as it seems and they are wrong. They can do so much these days.'

The next day we were able to go to Nijmegen for a comprehensive ultrasound

With heavy hearts, we sat in the waiting room. I entered the room feeling a lot less relaxed and took a seat on the chair. After a few minutes, which seemed like hours, I saw the man in the white coat looking serious, too serious. Indeed, a heart defect; AVSD. This defect comes in various degrees from mild to severe, and our little boy seemed to have the severe form. There appeared to be a complete septum missing between the ventricles, causing the oxygen-poor and oxygen-rich blood to mix. And once again, the doctor saw no stool, which meant an esophageal defect, implying that our little boy would never be able to swallow, never be able to eat or drink independently.

I felt the ground fall away beneath my feet

With difficulty, I managed to maintain my concentration to listen to what the doctor was explaining. He was going to review the results with other specialists to see what options were available. This would take a few days, and he recommended an amniocentesis to rule out other abnormalities. Also because these abnormalities could be associated with trisomy 21. The doctor didn't want to reveal too much, but he did tell us that if our son also had trisomy 21, the chances of survival would be very small. A child without trisomy 21 with such abnormalities would already be a challenge for the doctors. I was able to get an appointment that same day, as the doctor wanted to give us a clear picture as soon as possible of what this would entail. And then you were sent home full of emotions.

We ended up on a rollercoaster

Just a few days ago everything was fine, and now suddenly, bam, the ground is swept from under your feet, your head filled with uncertainty, fear, anger, and sorrow. But my maternal instincts kicked in too. I wanted to protect my son from all those scary doctors who were saying strange things about my child, maybe they were all lying, they wanted to take him away from me. The craziest thoughts were racing through my head.

We had to wait four grueling days for a phone call

A crucial phone call that would tell us the results of the biopsy: Did they find more abnormalities? And what would that mean? There we sat together on the couch with the phone in our hand. When the phone rang, I answered with a trembling voice. I heard one word and handed the phone to my husband. I couldn't listen anymore. Trisomy 21. When my husband put the phone down, I saw tears in his eyes too. I couldn't hold back my tears either, the pain and fear I felt then was like nothing I'd ever felt before. I already loved this little guy in my belly so much, how could I lose him?! Two days later, we had another appointment in Nijmegen, another ultrasound with a specialist and then a talk with a social worker.

The next ultrasound

With heavy hearts, we walked into the hospital, a place we had visited all too often, where we had only received bad news. A place I no longer wished to visit, yet there we were, walking hand in hand into that same small room once again. This time, three different doctors were present. I could barely understand what they were saying during the ultrasound. Afterwards, we sat around a table and they delivered their conclusion: our little boy had trisomy 21, a serious heart defect, and an esophageal defect. The outlook was grim, and his chances of survival were extremely slim. The doctor outlined one scenario: we continue with the pregnancy and our son is born at 40 weeks. The doctors were hesitant to perform the surgery; it was simply too complicated. There was a high probability that our son would die immediately, as it would be too much for his little heart outside my womb. Another option was to terminate the pregnancy, to let him go and spare him a life of suffering.

“What terrible words came out of that doctor's mouth”

My baby felt so full of life in my womb, he seemed so perfectly healthy. How could he then be so terribly ill? I just couldn't believe it. But we had to face the truth and make a choice. An hour later we were sitting with a social worker from the hospital. I kept saying: "It doesn't matter that he has Down syndrome, there must be a way for him to live, doctors can do so much these days." The social worker's response was: "If only he had just Down syndrome, but it's so much more complicated, the combination of everything makes it tough." The conversation didn't affect me much, it didn't sink in.

I didn't want to hear the truth

It couldn't be true that our little boy was so ill. I wished it wasn't true. I didn't want to lose him. I already loved him so much, I simply couldn't miss him. We walked through the corridors of the hospital towards the exit. Each time we had been here, it looked even worse, the news was even more dire. In two days, we would receive a call. We had to make a choice that no one wanted or could make. An inhumane choice. How could they ask this of us?

That afternoon we sat together as a family, our parents and us

We were all deeply saddened. My father-in-law tried to stay positive, but how could we remain hopeful after so much bad news? I felt shattered inside. Tears came, and I was at a loss. Clear thinking was completely out of reach. Then suddenly, I felt a few strong kicks against my hand, it was my little guy kicking very clearly against my hands resting on my belly. A smile appeared on my face. It was as if he wanted to say, 'Hey, cheer up!'. And at that moment, I knew: we weren't breaking anything down, we would just wait and see how things went and what would happen. But on one condition: we wouldn't let him suffer unnecessary pain. If things looked truly hopeless after the birth and his body couldn't cope, then we would have to let him go, out of love for him. But he would decide, not the doctors or us. The choice was his. We dried our tears and tried to get our lives back on track. I enjoyed the life inside me even more.

But then, 2 weeks later, when I was 23.5 weeks pregnant, my water broke

Like crazy, we drove to Nijmegen, where the specialists were. They couldn't stop the delivery anymore and our little guy had to be born. No one knew if he would survive the birth. It was a severe delivery. Even though my waters broke spontaneously, the delivery did not progress. Thoughts like: "See, he doesn't want to come out at all," raced through my mind. But staying put without amniotic fluid was obviously not an option, so we had no choice. After almost a whole day, there he was. No crying, no sign of life, his eyes closed, but miraculously: his heart was beating, very slowly and faintly, but he was alive. The doctors had already prepared us that he might not make it and that we had to say goodbye.

“What a beauty,” I thought

He was completely whole, completely finished. Even a beautiful complexion. I couldn't take my eyes off him. He lay very quietly, seemed to be in no pain and I might have imagined it, but it was as if he was smiling. As if he wanted to say: “It's okay mom and dad” But then suddenly I was told that the placenta wouldn't come out and that I had to go to the OR. As hard as it was, I had to leave my little boy behind. I handed him to dad and made him promise to stay with him. I didn't want him to be alone if he passed away. When I came to and returned to my room, I saw my husband sitting there. With tears in his eyes, he came over to me.

‘He has passed away, he went in my arms’

Together we cried. He lay in a beautiful blue basket next to us. My husband had dressed him very nicely with the nurse. I looked at him and still, I saw a smile. I was not the only one. Everyone who said goodbye and saw him said; 'It's as if he's smiling.' I see this as his way of saying: 'It's okay now, I'm not in pain anymore.'

A few days later, the cremation took place in a private circle

Just before they took him away, I went to him. I gave him a kiss on his forehead and said: “Goodbye my dear beautiful little man. I love you so incredibly much. Know that you will always be a part of us?! We will never forget you. We will continue to say your name. You made us mom and dad. We would have loved to keep you here with us, but now go on up and shine like a beautiful star!”

Hello little one, mommy loves you