Some time ago I had the privilege of meeting Janine. Janine is the mother of twins and has been volunteering for three years with the association "In Liebe gehüllt e. V." Under the name "Potsdamer Mädels, gemeinsam für Frühchen und Sternchen" (Potsdam Girls, Together for Premature Babies and Star Children), she and her fellow volunteers sew, knit, crochet and craft for the surrounding hospitals. Their focus includes premature babies, and they equip neonatal units such as the one at Klinikum Westbrandenburg in Potsdam and Brandenburg. Their goal is to offer comfort and to support the parents of premature babies and star children.
Four years ago, Janine was pregnant with twins. Her son Luke was only able to stay with his parents for a few precious days. The following text was written by Janine at the time, in an online group for mothers of star children. Groups like this are a true gift, a place where one can speak about what has been lived through and receive genuine empathy.
Janine's Personal Story
"On Thursday evening, 7 December 2017, at 10:30 pm, my partner Carlo drove me to hospital with suspected contractions. I was at 26 weeks and 3 days of pregnancy. At the hospital I was examined and it was confirmed that they were indeed contractions. Unfortunately the amniotic sac was also very close to rupturing. To give the babies the best possible lung function when they came into the world, they needed to stay inside for at least another two days, ideally ten. I was given tocolytic medication and other important drugs, including a lung medication and antibiotics. Afterward I was brought to my room. The contractions, which had seemed mild at first, grew stronger and stronger, until they were coming every minute, making an emergency caesarean section unavoidable. Fortunately, in our misfortune, all the key doctors were present. Lara (born at 2:41 am, 34 cm tall and weighing 745 g) and Luke (born at 2:42 am, weighing 980 g and 37 cm tall) came into the world. Already that same day, Lara no longer wanted to be ventilated through a tube. She wanted to breathe on her own, and she fought so hard for it that the tube was removed at midday. That afternoon, Luke fought against his tube too, and it was removed by evening. Both were relatively stable. The next day I was even allowed to cuddle Luke. They had planned for one hour, because newborns at that stage cannot hold their body temperature for long, but he did so wonderfully that it stretched to almost one and a half hours. The following day, however, Luke developed breathing difficulties, and the nurses and doctors had to act quickly. He was stabilised for the time being. In the afternoon I visited both babies. The nurses told me about Luke's breathing problems. During the visit his condition deteriorated again. I had to leave the room. I walked the corridor for a while, then returned to my own room. The doctor said he would come to tell me everything there. Completely shattered, I called my husband Carlo, who set off immediately. Shortly after the two doctors arrived in my room, Carlo also arrived. Together we went up to the neonatal unit. We had to be told that Luke would not make it, and that the only option remaining was to let him go peacefully. So that he would not feel any more pain, he was given, among other things, a sedative, and he was able to fall asleep in my arms. The next day they brought Luke to a separate room. My parents and I were able to say goodbye to him once more. I held him in my arms and grieved together with my parents. As deeply as we grieve having had to let him go, we are equally proud of him. He was so brave and so strong, and he saved the three of us. Luke had sensed it already inside the womb. He did not want his sister or his mother to be hurt. He gave me all his strength, so that we could share one first and at the same time last cuddle, longer than planned. Now he watches over us in peace. Addendum: we arranged for a post-mortem, so that other affected families might be helped. At that point there were three possible causes, including a pulmonary haemorrhage. The pathologist confirmed that Luke had died of a pulmonary haemorrhage that had already begun while he was still in the womb."
Our Visit Together to the Woodland Burial Ground
Janine's story fills me with an immeasurable sadness. We first came to know each other through Facebook, because I wanted to donate my wedding dress to her association. I told her about memorial jewellery and what a wonderful possibility it would be to carry little Luke close, in a personal keepsake. Janine said that if she had heard about us earlier, she would have gladly had a piece made, but she no longer had any mementos or materials. Her story would not leave me, and then an idea came to me. Janine had once mentioned that Luke was buried in a Friedwald, a natural woodland burial ground. I suggested that we could work materials gathered from his tree into a piece of jewellery. Janine loved the idea, and she allowed me to accompany her to Luke's tree.
For me it was the first time I had ever visited a Friedwald. I can completely understand why she and Carlo chose this form of resting place. The atmosphere is quite unlike anything else. It is quiet, yet full of life. The birds sing, the beetles move through the undergrowth, there is a gentle hum and a rustle in the leaves. In this particular Friedwald there are trees set aside especially for star children. Little Luke rests beside one such tree. The thought that he is not alone there is something I find beautiful. We gathered some fresh, vibrant moss from the base of the trunk, and a little bark. I am certain the piece will be beautiful.
That day stayed with me for a long time afterward. I was sad and moved in equal measure. Janine is such a strong and wonderful woman and mother. She has found a way to give Luke a firm place in the life of their family. Luke's twin sister joined us on the visit to her brother, and she won my heart immediately. She told me about her brother and how much she misses him, and she did so in the most naturally warm and tender way. While she was speaking, two butterflies flew past us, and she was quite certain they had come to visit her brother. I felt I could sense the particular bond that runs between twins.
Thank you for that day, and for your trust, dear Janine.
Addendum, 15 June 2021: The memorial bracelet made from the moss and bark of Luke's woodland tree has been completed.