Rachelle

It was difficult for me to get pregnant, but after the third round of fertility treatment I was finally pregnant. I was so happy and me and my husband Karim could not wait to have kids.

Although we saw that the baby was not growing very well and there were some possible signs for placental insufficiency early on, I told myself not to worry and that everything will be fine.

At the 20-weeks ultrasound the technician was doubting and asked the children cardiologist for advice. Everything seemed fine: all the doubts were gone, the heart was ok, the brain developed and the spine and back were closed. However, there was this feeling…..hard to describe. I was looking for a confirmation and answers. We are not tall, low-risk for complications, both the ultrasound and the CTG seemed fine – but still….I tried to put all worries and negative emotions aside.

During the CTG at 32 weeks the heartbeat of my baby dropped continuously. The gynaecologist, who was a friend of mine, told me immediately that I have to stay in the hospital. I wanted to protest, but I knew it was necessary. My father was there with me at the appointment, almost as if he had known before. Karim was working in Germany and came over immediately, after I called him.

The caesarean was planned for pregnancy week 34 and they gave me cortisone injections for the lung ripening of the baby. For two weeks Karim slept in the hospital, too, to be with me. That was a special time, which brought us even closer together.

During the hospital stay several times per day a CTG was done. One morning the baby`s heart rate dropped very quickly. I was rushed to the operation room. Deep down I knew something would happen, what no one could predict and no one dared to say out loud.

The gynaecologist performed the caesarean and Rachelle was born. For a moment I could see and hold her. The team said that everything was looking good and brought her right away to the couveuse. But I had already seen that she had an extra finger and was crying on the inside.

After the epidural anaesthesia was taken off, they brought me to the maternity ward. Karim saw that I was sad and asked me, if I knew more. Several hours later, the paediatrician came and told us the bad news.

Based on Rachelle`s appearance – her extra finger, her round feet and missing part of the scalp – they feared it was Trisomy 13. Trisomy 13. Not compatible with life. This echoed through my head.

They checked her chromosomes. It was Friday and the following weekend seemed to never end.

The next days were horrible.

When they told me the result I started to cry. But I was not shocked. I was expecting her diagnose already. Still…somehow I was hoping for a miracle. I started to research for success stories. I still had hope.

Rachelle was lying in the couveuse, attached to a ventilator to help her with her breathing. The surgery had been hard for me. I was tired and really knocked out. But I was trying to be with my baby girl as often as possible. I missed her so much.

Slowly the time had come and we had to make a decision about Rachelle`s life.

We needed seven days to decide whether we wanted to stop the machines or not. seven days. A blink of an eye for people, who had to say good-bye. Seven days, in which she gave everything she had. For us it was a time full of hope and despair at the same time.

I wanted to be a good mother. And I wanted to be good scientist. And also follow my religious beliefs. If Rachelle would stay alive – what would that mean for her? Was it selfish from us to give her this life? I spoke with a theologist. He asked me, why I would want to prolong a life full of suffering for someone I love so much? I found support in my own religion. The Islam says that children, who pass away become angels. That on the other side, the world is nice and soft, in comparison to our hard world here.

We decided to stop the machines. Rachelle`s lungs continued to work and her heart kept beating.

I thought that this was going to be a success story after all. Then slowly her breathing got worse.

In our family room in the hospital we got all the space we needed, to be with our little baby girl. All of the people, who were important to me, were there with us. We decided to give her morphine and that made the breathing softer.

She was lying in our arms. I still feel and see her soft skin, her little hands and her little fingers. She was so beautiful. Almond shaped eyes, black hair and a sweet little nose. She still had her eyes open and looked into the world around her. Very calm and peaceful.

It was ok for her to go. She did not fight. She felt the love from everyone around her. And there she went….she gave her life.

During the time after Rachelle passed away I learned how important it is to have your loved ones around you. It is true, what they say and then I learned, how precious my friends are.

It was a very difficult time and I was avoiding the entire topic. And the last thing I wanted, was to be taken care off 24/7. I created a shell around me. There was no other way for me to survive.

Oftentimes I visited Rachelle`s graveyard, but the pain was too much for me to bear. Karim was very sad too, but he dealt with it different. We shared a lot, but we could not share the death of Rachelle. And it took a long time, until we finally could go together to Rachelle`s graveyard.

I dived deep into my work. It gave me some peace and it was like an anchor in my life. I escaped emotions and interactions with people and just worked. My PhD supervisor supported me and created a safe environment for me. He called me every day, just to check in. I am grateful, that he kept believing in me. Although I tried to do my best, I struggled and everything was more difficult, than it was ever before. Reading a paper took me forever and I had difficulties to attend meetings and to stay focused. But my colleagues stayed supportive throughout this time.

To this day mother’s day is very hard for me. Especially in the beginning, I felt this emptiness inside. Now, years later it is getting better. Baby steps.

I am grateful for my son Mazen and my daughter Saja, who were born after I had Rachelle, for my husband and the work that I have. I am doing my best every day – for my children, and for all the women that go through vulnerable phases in their lives. Therefore, I wrote the “Queen of Hearts book, de kracht van kwetsbaarheid”. To raise awareness to the impact of pregnancy on women’s lives. To reflect on the power that is in them to overcome the unplanned circumstances. The pregnancy does not end with birth. It has a huge impact on women’s Identity and its time we start talking about that!

The book can be ordered via www.queenofhearts.eu

by Chahinda Ghossein-Doha

(written in collaboration with Anna Schueth)

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