If your child gets seriously sick in Costa del Sol, I don’t recommend the paediatric hospital that treated my child.
I will share what happened to us and hopefully some things can improve in the healthcare of small children in Malaga. We were blessed with two beautiful healthy baby boys, twins in the autumn 2019. They were born in Stockholm, Sweden as I´m Swedish. Everything was fine, all tests good and after 4 months we went to Malaga, Spain so their Spanish father could work.
We started to notice that one of our boys didn’t develop like his brother. He was hard to feed, he didn’t lift his head, and a lot of the time he was sad. We were isolated due to Covid and we couldn’t even visit the pediatrician. One month passed and the differences between the twins were remarkable. We needed help, something was wrong. At last we got to meet a doctor at Puerta Blanca, Theresia. We told her our worries, she said he was fine. She didn´t listen, just looked at his weight and length and said “all good!”
I rang the children’s doctor in Sweden just to put the numbers in their journal and she said that the doctor must have measured the head wrongly because it was too little. Probably she didn´t do it correctly, she said – no worries.
But we were worried, we knew our baby boy needed help. We went to a private doctor who just looked at our son and said that “he has hypotonia and needs a lot of exercises.” We contacted a private physiotherapist and went to work with her.
One day after feeding our son couldn’t breathe, his lips turned blue and I grabbed him. We drove fast to the maternity hospital in Malaga. Due to Covid they just let one of us in so I went inside with my son although my Spanish wasn´t good enough for medical language. They did a lot of tests and said we had to stay overnight. We stayed two weeks the first time. We were so afraid he would stop breathing again and I couldn´t relax. They said I could get a meal downstairs but I couldnt leave my son. If I had to go to the bathroom I ran.
I was crying and it was impossible to sleep. Outside the nurses were laughing which felt so inappropriate. Everyone at the children’s hospital who had to be there during the night were scared, exhausted and needed someone who cared, not a party outside the door until after 24.00. Other nights I heard other parents crying. The party outside continued.
I had to eat and the nurse said she could look after my son while I went to collect the food. I waited until my son was calm then I went out and asked her to be with him. I ran. Maybe I was away 10 minutes when I heard him crying hard in the hallway. I ran and found that no one was with him. I was furious. After calming him, I went to her and asked her why she wasn’t with him. She said that he was sleeping, which I thought was a lie. I never asked her or trusted her again.
More tests, blood from his head, x-ray, corona test right up to his brain from a red headed nurse with no heart. It was hard standing outside not allowed to comfort your child, just hear him scream. We took turns – one of us slept at the hospital in a chair, the other with his twin brother. We didnt see each other more than one minute. We were not allowed to be in the room with our sick son at the same time. Not to translate.
After a few days they told us our son had epilepsy. They gave him medicine and we were told he will never get rid of epilepsy, the medicine is forever.
It was a shock but we would do this. We were slowly adapting to the thought that our son would never be able to do all the normal things he should experience.
One day when I came to change with my husband his face was white. He didnt want to say anything but I saw he´d been crying and I didnt let him go until I knew.
“Is our son going to die?”
“They think he has a disease called Menkes and, if so, he only has a few years.”
“Who says? When did they say it? Why didn´t they speak to me as well??” “They THINK?”
So the doctor just said what he thought without both parents, without sitting down with my husband. Just saying “google it.” And there it was…our son was dying, there was no cure and obviously no psychology education at this hospital. We were left alone to google it – one at the hospital and one at home.
After two weeks we went home. Our son had lost his smile after all the medicine they gave him. He now had a sond (gastric tube) for eating, which felt unnecessary. We changed the living room to a hospital with a strict schedule for everything he needed. Every second hour he needed the sond and medicine every fourth. We were waiting for some injections that might help Menkes patients. We hoped, we prayed and waited.
We thought the other medicine started to work, because he lifted his hands a little but when we came for a check up at the hospital they said he had even worse epilepsy – the West syndrome. The female neurologist just shook her head. She just gave us bad energy, with no hope. She said she had seen this before and there was no hope. No hope for her to be kind either. We just met so many people at the hospital that didn’t have a proper manner, who didn’t even like kids. Following my three weeks there, they didn’t let us out after West syndrome. No one said anything kind, nothing comforting. We were there with a very sick child. We were in shock, in grief but we didn’t get any help.
One day my husband said there is a psychologist at the hospital. “We need that, I said, you too.”
The psychologist came to my room. He sat down and we started talking but all the time the door was opening, All the time it was something – food or medicine or a question. He said he could come back if it was a bad time. “Ok, come after 14.00 my husband Will be here and he needs to talk as well.” He never came. After leaving the hospital, I told my husband, “we need help, can we talk to the psychologist from the hospital by Skype?” Yes – we arranged a time for calling and arranged for our twins to be occupied. We prepared the camera, the tv and waited. He didn’t call. We waited 20 min. Afterwards he said something urgent came up but he didn’t arrange a new call. I still wonder what was more urgent than a dying child.
We got the injections, put them in the refrigerator and started to inject him every morning and night. He was crying and we were brave. We were waiting for a miracle. I found a Menkes specialist in USA. We talked through Skype and I asked him if our neurologist could contact him, if they had any questions. He said yes. They never did.
We had an appointment at the maternity hospital with social assistance. I said something about my son is dying and she laughed and said no. I understood that she didn’t know the diagnosis and hadn’t bothered to “google it.” We had to wait and see if they would give us a tarjeta de minusválido (disability card). She said there is no difference between a normal baby and a sick baby if he doesn’t have a wheelchair yet. But she was wrong, I took my boys to physio training in Marbella. There was no parking like always, I had the minusvalido but couldn’t use it. I went around and around twice a week looking for a parking spot. 37 degrees celcius, I took out my “normal baby” from the car and he sat easily at my hip. He helped me by lifting his arms to me and in that way he wasn’t that heavy but my little jelly boy 11 kg… his body couldn’t reach for me, he couldn’t sit on my hip. I had to pull him out from his car seat laying down with the sond hanging, it wasn’t easy to put the door totally open to get him out. A tarjeta minusvalido would have helped enormously, and in my opinon you should have a VIP line for children who are dying, to have an opportunity to use it before it’s too late. The system was too slow for us. We didnt get it.
When we had to stay again at the hospital I really didn’t want to go, because they treated us so badly. “Oh you are here again!” first comment with negative attitude when they saw me. I was thinking it might be a culture thing, a language thing or just really poor education because getting paid to work there should also include some kind of good manners and professionalism.
Once I was upset not understanding the nurses. I pointed at a poster saying “we can translate a lot of languages including Swedish” but when I asked for a translator no one helped me. All the time the nurses and doctors gave me the feeling I was bothering them.
I had one nurse in the evening saying she always threw away the cable to the sond after using it and got a new one. I said that to the next one, when I saw she wasn’t even cleaning the dirty one. She was so angry, screaming in front of everyone. I couldn’t understand all the bad words but PUTA (bitch) shouldn’t be used at work. I was quiet, in shock and just went to my room. I was just repeating what another nurse had told me. I didn’t want her to touch my son but I didn’t have any choice. Later she came and said she had called the other nurse and she was wrong and would come and apologise. In my opinion the one screaming at me should apologise and not the nice one. I didn’t understand the hierarchy at the hospital, I just understood I had offended her and I was even less wanted there. (Do I need to say it was really uncomfortable sleeping in a place where you are not wanted.)
When we were at home my son sometimes threw up every meal or had diarrhoea. I didn’t know who to turn to with questions. I emailed the neurologist but she never answered. At the next meeting I asked her about that and she said she had no time to read email. (even though she asked us to send videos of how the epilepsy developed.) She was so rude. I could see how embarrassed her younger colleague was.
The only person helping us was Elena. She was in the “programa de pacientes cronicos complejos” (complex chronic patient program). She was like a spider in the net and even if we couldn’t call her she got things done and read her email. When I asked to change the rude neurologist she helped me. She also speaks a little English.
Our little baby got high fever when my husband was working. I went with both my twins to the emergency department at the maternity hospital.
At home I tried to lower the fever but it didn’t work. At the hospital they once again hurt my son by doing a covid test. The neurologist came down, didn’t look me in the eyes, talked to the doctors, didn’t look at my son but sent us home with a breathing mask. Third day with fever I chose to go to the closest hospital for us – the hospital in Marbella. Of course I couldn´t park the car close. When they saw my son at the entrance they took him and ran. I was calling my husband’s family to help me out with his twin brother.
It took forever, I wasn’t allowed to go in to my son. They changed floor, I had to sit outside.
All these cables around his little body. His face covered by a mask to help him breathe. It was hard to breathe listening to his difficulties.
It is foggy in my brain what happened, but what I do remember is the doctor. She was the first one looking in my eyes, touching my shoulder when she was working after hours. She said we have to put him in an ambulance and go to Materno as he isn’t getting better.
“Noooo, I don’t want to go there, plz!”
“We don’t have all the things he needs. I’m sorry!”
We were waiting for the ambulance more than an hour. The nurses and doctor all came into our room, keeping me company, talking with low voices. It was respectful and nice and I didn’t want to leave them. Not to go to a hospital I didn’t trust at all.
The ambulance came but they didnt let me go with them. I had to leave my baby and go by myself. I called my husband, told him to wake up and go to Malaga.
Waiting forever outside Materno, went with them up to a new floor, to the intensive care. I had to sit outside alone. When the ambulance staff left, I knocked on the door. They opened and said I couldn’t come in because it was in the middle of the night. I could come back at ten in the morning.
“I will not leave, I want to see my son!”
She let me see him, this little, little boy in a big bed with machine and cables all alone. She said I could sleep on the bench outside if I wanted. In the morning they called and asked both of us to come at eleven. I could see my husband didn’t understand. But I already lost my boy. I wasn’t really there myself. There were all of a sudden a lot of people in a very small room. I only recognised the neurologist that sent us home the other day and Elena. They spoke Spanish. I just understood they wanted to turn off the breathing machine. They wanted to end our boy’s life.
They wanted to do some x-rays of the brain and after that we should be prepared to end his life. We went for a walk. It still hurts a lot no one translated everything to English. I still have a lot of things I don’t understand. Why the hurry?
We were sitting with our son for hours, we couldn’t do it. After a while they just came in and started to get rid of cables.
“Did you say we are ready?” I asked my husband.
“No..”
We wanted to be alone, we called our families, crying. We sat with him, holding him. But he didn’t leave us. He was still breathing. He could breathe without the machine.
The nurse or doctor came and just put a lot of drugs in his body. He didn’t die. He coughed. They put more drugs. And that was the end. It wasn’t beautiful it was an awful end.
We walked away and felt their eyes on us. Left our baby boy at the worst hospital I ever experienced. The psychologist never contacted us.
Hospitals have a mission…to cure….if they can’t cure….to ease the pain…if they can’t ease the pain…to comfort.
In Materno they do none of it.