HISTORY

When I was born, I suffered from asphyxiation and, as a result, I was diagnosed with Hypoxic Ischemic Encephalopathy (HIE). Because of the HIE I have Epilepsy and Spastic Quadriplegia Cerebral Palsy; I have cortical visual impairment, motor difficulties and significant developmental delays.

Despite all this, I am a happy child, very curious and eager to learn and, above all, to enjoy life. The day after I reached my first month of life we were able to go home. Since then I have never stop fighting and surprising with my advances and learnings.

I’m very attentive in therapy sessions and every day I try my best to learn how to sit, roll to the belly and crawl. These challenges are very difficult for me but I keep getting better.

I have a special sensitivity to music. I especially like jazz and classical music. Billie Holiday and Tchaikovsky have been the soundtrack to very special moments.

Water is my favourite environment; I’m like a fish in the water. I love to go swimming with other children and, although I drown dangerously in my first dives, I have learned to inmerse myself and enjoy it a lot.

Everyday. We learn as a family. We are a great team!

NEVER GIVE UP

DO NOT PUT LIMITS

LIVE THE PRESENT MOMENT

LOVE EACH OTHER VERY MUCH

are our values.

*Biel*

DIAGNOSIS

Biel was born by an emergency c-section after a very altered result of blood PH. He had to be resurrected and convulsed several times. He had suffered severe perinatal asphyxiation. He was transferred to Vall Hebron Hospital, one of the reference hospitals prepared for these cases. Luckily Judith could also be transferred to the same hospital within a few hours and we were able to be the three of us together and very close to Biel.

Biel was put under therapeutic hypothermia; In the Vall Hebron Hospital NICU Biel, which is an effective and safe treatment to reduce mortality and prevent spreading of the injury. For 72 hours, and by sedation, he remained in hypothermia (body temperature of 33ºC). After 72 hours, an overheating was performed at a rate of 0.5ºC per hour up to the normalized body temperature of 36.5-37ºC.

After having performed all the diagnostic tests we met with the NICU neurologists who informed us of the situation. Biel had suffered from asphyxiation and the seizures he had just after birth confirmed the severity of his Hypoxic Ischemic Encephalopathy. We were informed that the brain damage was severe, extensive and irreparable with serious consequences for his future life. This would lead to a very dark, almost vegetative, and filled with a lot of suffering quality of life for Biel. It was very likely that Biel would never be able to keep his head upright, sit independently, crawl, walk, talk, feed or take care of himself and not even recognize his own parents; meaning, he’d be very disconnected from the world. We were also told that life expectancy could be reduced to approximately 6 months.

We were told that we had to make a decision: whether to go ahead knowing the life that awaited him or stop treating complications and let him go. We were devastated, we couldn’t believe what was going on. The pain was indescribable. Judith and I spent two days in silence thinking about what was the best decision and hoping we’d both decide the same. With a shrunken heart Judith whispered to Biel´s ear: «You are and will always be a free being; do what you want to do.» We finally decided not to treat the complications. So we were advised to take him as long as possible in our arms to create bond with Biel and make the grieve less severe. He was just born and he was leaving? The pain that engulfed us was indescribable. We held him in our arms, we talked to him, we sang to him, we took pictures of him. Within a few days he was disconnected from the ventilator, and he breathed. He was taken away from all the medication and remained stable despite an infection. At the same time Judith was in the surgery room once again due to a sepsis. She entered the surgery room for the second time in less than 10 days with a high probability of having a hysterectomy (removal of the uterus) if the scan revealed too much damage to the organ. Fortunately this wasn’t nesessary and gradually ans slowly she started to recover. The day came when the doctors told us there was no reason for Biel to remain in the NICU and they moved him to a standard room. There we met Carme, an experienced nurse who accompanied us in Biel’s recovery. Her commitment and dedication caused Biel to take his entire milk bottles. Suddenly one day she told Judith, as she held Biel in her arms: » Isn’t it true that you and I got Biel to take the whole bottles?» and suddenly, without any warning, she removed the nasogastric tube. That moment was wonderful and we lived it very intensely because that tube was Biel’s last dependent connection with medical technology. Biel was finally free of tubes and machines!

We celebrated the first month of Biel’s life in the hospital. Judith had been discharged a couple of days earlier. And the next day, we were able to take Biel home. An unforgettable moment. Only those who have experienced a similar situation can understand the tornado of feelings that surrounds you, some good and some not so good.

As soon as it was possible, Biel was admitted in the early stimulation program at Parc Taulí Hospital and nowadays he continues attending therapy twice a week, where he receives physiotherapy, speech therapy and psychopedagogy. As he is passionate about water, he also attends baby swimming once a week and we are always doing a lot more of research in order to be able to offer Biel the best start in life.

*Jorge*