Get to know our story
We discovered that our baby is going to have a heart defect during the pregnancy. On February 22, 2016 during the pregnancy ultrasound we heard that our child’s heart was not working properly. 4 days later we did a prenatal echocardiogram. We heard the words all parents are extremely afraid of: Your child is seriously ill. And then – further blows. The diagnosis: a critical defect – HLHS – hypoplastic left heart syndrome. A three-stage cardiosurgical treatment. It is impossible to restore the heart's normal anatomy, it will always remain a single ventricle heart. The child has no chance of survival without a surgery immediately after birth. Such operations are very risky and many children don’t make it through. Suddenly, we had to get used to the idea that what we took for granted, like the fact that our daughter will one day graduate from high school, go to college, get a job, have children, is not really that certain. Yet we did not expect at the time what terrible moments we were going to go through and how many dangers were awaiting us. Thus began the battle and the race for the life and health of our daughter, Nina. Over a month before the birth of our daughter we moved to Cracow to be able to treat her in the Children's University Hospital in Prokocim. We did not realize that on and off we would spend in Cracow a total of six months.
Nina was born on time in spite of predictions that her delivery would be premature. But she was a tiny child – weighing only 2.5kg (5.5lb). Immediately after birth, instead in her mother’s arms she was put in a hospital cot which became her home for the first three months of her life. She had her first life-saving operation at the age of 2 weeks. Nina struggled with the radical changes which had to be made in her body – her recovery from the surgery was long and slow. Her low birth weight made it difficult for her to fight for her life. For almost one and a half months she was mechanically assisted by a breathing ventilator and then by a CPAP device. Practically, during her entire hospital stay Nina was fed through an NG tube, and at some point only parenterally, because any attempt to feed her ended up with vomiting. Due to her anaemia, she underwent a blood transfusion. She had to endure invasive lungs examination, pleural fluid draining, countless punctures and other painful treatments. Despite the ordeal our daughter had to go through, her condition on discharge from hospital was good. Over the next weeks we could enjoy a nearly normal life at home.
Nina’s second operation took place as planned on January 17, 2017. Unfortunately, also this time our daughter had to fight a tough battle for her life. On the second day after the surgery Nina had to undergo urgent cardiac catheterization due to a threatening blood clot, which deposited itself in the left pulmonary artery, followed then by aggressive medical treatment. Fortunately, doctors’ reaction was immediate and Nina’s condition improved and gradually reached stability. Nina had to fight with heavy bleeding from her nose (which resulted in the need to introduce breathing tube through the mouth and administer muscle relaxant medication for several days), painful sores from plasters, fever that lasted for days, residue in the stomach, and eventually a rotavirus infection, until she was finally able to go home a month later.
It was a very difficult time, although we experienced it differently than after the first operation. We already got to know Nina and watching her in serious condition, swollen and feverish, was difficult to bear. We were worried about her further development. The tiny Nina at 7 months old weighed only 5 kg and was exhausted by the hospital stay. Fortunately, she quickly recovered and we timidly started to open up to normal life that we knew from before the diagnosis.
Despite her difficult taking off, Nina managed to catch up with her healthy peers. At first glance, compared to other children of her age she is “only” extremely underweight. At the age of almost 2.5 years she weighs a little more than 9kg (19.8lbs). Initially we were afraid whether she’d be able to walk, and she can now run and dance, or whether she will have her voice after a long period of intubation, and she speaks in complete sentences, and even counts and reads her first letters. She is extremely cheerful, smart and sociable. One could say – a normal child, though our lives will always be different from commonly understood normality. The reminder of this is not only the scar across her chest, hospital visits and medications that Nina takes several times a day, but also the fear for her life which is with us all the time.
Nina is still waiting for another planned operation – the Fontan surgery. It will not fix her heart, but will allow her to continue to live and grow. We are closely observing the development of technology that could allow to stop the progression of Nina’s condition caused by different from physiological blood circulation, as well as to postpone or even avoid a heart transplant, which – if works – is not a solution to all problems. We know that we are very lucky that Nina is now well. Many of the children we met along the way have passed away. Unfortunately, we also know that with Nina's condition we will never experience a complete peace of mind and we will never be able to say “the worst is behind us”. Therefore, when it came to organising the last of Nina's planned surgeries – the Fontan operation – we decided to look for the most optimal solution to minimize the risk associated with such severe treatment. Hence our decision for the final stage of the surgical palliation to be held at the University Hospital in Münster with Professor. Edward Malec, who achieves great results in surgical treatment of HLHS. His results after the Fontan surgery are: 100% survival rate, short hospitalizations, minimum complications. The child does not have to reach precise body weight for the surgery which for Nina who is severely underweight is crucial. It all convinced us to make this decision. In Germany, we will be able to stay with our child 24 hours a day, also in the intensive care (ICU), which in Poland is still impossible. In our hospital in Poland, ICU visits are allowed only 2 times a day and last for 45 minutes. It is very important to us to be with our daughter during the entire treatment process. Having had the experience of a long hospital stay and complicated postoperative course, it's difficult for us to imagine that after such a complex operation Nina will not be able to have her mom and dad at her side. Proffesor Malec has already agreed to perform Nina's surgery and we got officially accepted by the UKM to start the treatment.
The expected costs of the cardiac catheterization, the Fontan surgery and hospital stay amount to 37 000 Euro. In case of any complications or other unforeseen illnesses, this budget will be recalculated in consideration of additional treatment performed. So in fact we might need more than that. We have already gathered around 1/3 of this amount thanks to your help. We hope that with your further support we will be able to finance our hospital stay in Münster.
We would like to thank for the continued support and the help so far.
Karolina and Andrzej Samsonowicz