Maternal instinct – fight for survival

„Only nine months old, our son gave up his struggle for survival in early August to be brought back shortly thereafter by the doctors, who could have prevented this whole drama from the beginning.“

We received a very emotional and extensive guest contribution and would like to share it with you.

The important message:

Listen to your heart and feelings, be strong and stand up for your child, remain persistent. It’s better to insist one more time and to be a pain in the neck for hospital employee than to hold regrets forever that you might have saved your child!

I need to start with some details – because there have been too many reckless decisions, on too many occasions:

Luckily we are a very healthy and resilient family. Until this summer: I got sick first, followed quickly by my three children and my husband. As the cough of my eldest didn‘t get any better and my youngest still had a cold, I decided, on a Saturday morning, to consult a paediatrician with both of them. The doctor detected a „murmur in the right lung“ of my eldest, took a blood sample and found a bacterial infection. He prescribed a seven-day antibiotic treatment and we were made aware to be attentive and react quickly, if another member of the family suddenly felt worse.

Apparently it was impossible to determine the type of bacteria just yet, but our son certainly was still contagious. When the doctor couldn‘t find a murmur in the lungs of my youngest, we were discharged – relieved that it didn‘t seem so bad, unaware of how bad it was to come.

Not even twelve hours later, Sunday night, our youngest suddenly felt worse.

Despite fever suppositories, his temperature didn‘t drop and he breathed heavily. At 6 a.m. my husband and I took him to the emergency room. A nurse quickly took care of us and the intern doctor on duty was consulted immediately. After the usual weighing and taking the temperature, we were questioned about his medical history. I explained that we all have been sick for two weeks and I particularly mentioned, that we consulted a paediatrician the day before.

I told her that my other child was prescribed antibiotics and that the paediatrician explicitly told us, there was a high risk of infection and we should react immediately if one of us were to get worse. “That’s why we’re here!” – I told them.

The assistant doctor listened attentively, but then said pretty quickly that this was probably a case of croup.

I replied that our child rarely coughs and if so, productively. We know about croup and it’s characterized by a dry and “barking” cough. Instead our child breathed heavily, without coughing. One again I mentioned, that his brother has an infection and is on antibiotics.

At that point I heard the sentence for the first time: „But this is about the little one and not the big brother, it‘ s completely unrelated!“ Using this sentence, I would be silenced a few more times in the next 24 hours…

So, my child was diagnosed with croup and had to inhale his first dose of adrenaline.

It was very hard for me to press the breathing mask on my baby‘ s face, but he soon realized that this mask was helping him and the saturation increased to 100%. (for monitoring a sensor was taped to his toe) But when I lay him down to put on his clothes, the nurse suddenly noticed that breathing was so hard for him, his neck was contracting, as if someone was pushing a pencil into his throat. So he got a second dose of adrenaline. This didn‘t improve his breathing, he had to inhale another drug to further dilate the bronchial tubes. Since he was not much better after this third inhalation, a senior doctor was consulted.

I repeated the medical history and again I thought it very important to mention, that the big brother was diagnosed with an infection. But the senior consultant also said, that this was about the little one, not his brother, both cases are not related and this is just a more severe case of croup.

Although I felt that powerful urge to explain once again, that I had a strong feeling that his brothers infection was very important, I remained silent. At one point I even started to believe the version of the „more severe croup“ case.

After using an X-ray image to exclude a foreign body in the trachea, we were moved to the ward, because we should stay 24 hours for monitoring – so medical staff could intervene, in case of a classic croup seizure during the night.

Because of the risk of contagion, we were not allowed to leave the room, gently cradling our son, walking up and down the room all day, in time to the noises of the monitoring device.

Time did not seem to pass and so I still cradled my child in my arms, when it was getting dark outside.

I think it was about 9.30 p.m. when I laid him down to change his nappy. He immediately turned blue and gasped for air. Saturation dropped to 70% and I called the nurse. She passed me an oxygen mask and instructed me to put it on his face.

It must have been about an hour later when I took the mask off for the first time.

Immediately the saturation dropped and I put the mask back on his face. He started crying and whining and I called for the night nurse.

He had a fever, and when we tried to lay him down to give him a suppository, he immediately turned blue again. So I took him into my arms and the nurse administered the suppository. I was rocking my child all that time, so he wouldn‘t get upset. As she explained to me: The more upset he got, the more swollen his throat would be. He was wearing the oxygen mask for about three hours now, without interruption. As soon as I tried to take it of, the saturation dropped rapidly. Somehow I was waiting for that next predicted croup episode – but there was no coughing and at one point I called for the night nurse again.
It had to be about 1 a.m. now, and I asked her if that was really normal and if we couldn’t do something else. How long was I supposed to wait until it was better and I could finally take that mask off his face?

The nurse called the intern (assistant) doctor but she was put off: „You can‘t do anything else during a croup episode. Just wait and see.
I told the nurse that my son wasn‘t even coughing, he had difficulty breathing, but he had not coughed once! It can‘t be croup!
So the nurse called the intern doctor once again. I overheard her saying: „Please come here, even just for the mother and so we can all calm down.“ But again: She didn‘t make an appearance, and so I continued to cradle my child, praying that this night may finally end.

Suddenly the door opened, a young doctor came in and without saying a word he put his stethoscope on my child to listen to his lungs and then he disappeared again.

I was too exhausted and too surprised to respond to his appearance and so I continued humming a lullaby. Again and again.

When the night nurse came in again at about 3 a.m. to take his temperature, it had risen and all I could see in his beautiful light blue eyes was panic. He was now on oxygen for the past five hours. The night nurse called the intern doctor again and before the doctor could put her off, the night nurse threatened, she would call a senior doctor. It felt like an eternity until the intern doctor finally made an appearance. She stroked my sons head twice, examined his lungs with a stethoscope. „There is nothing more we can do, it’s croup.

„Just stand with him at the open window, the air will help him!“

I told her that he has been on oxygen for the past five hours now, that he turns blue as soon as I try to take off the mask and it‘s not normal! He wouldn‘t even cough, that cannot be croup and he certainly got infected by his big brother. She just laughed and said: „It‘s not related. Just stand at the window with your child and be patient!“ And she disappeared.

I don‘t know how, it felt like remote-control: I moved to the open window, holding my child in my arms, with his mask on, to get fresh air.

I felt so desperate and cursed the whole world.

The night nurse was visibly feeling uncomfortable in her role and offered to give him adrenaline once more. But that also didn‘t help. By then, not only his throat was contracting but also his diaphragm. It looked so surreal, like someone stabbing my boy with a dagger. By now he was totally apathetic and his eyes rolled. I told the night nurse I might as well go home and stand with him at the window. She went and called the intern doctor again.

But the doctor didn‘t come to check on my child. AGAIN!

The night nurse had to call her a second time and told the doctor that she has to come over NOW, it‘s an emergency. Eventually the intern doctor arrived and when she saw his breathing (by then I was holding him in my arms for seven hours, with the oxygen mask on his little face), she called for the assistant doctor from the ICU.

I had to repeat the medical history, told her about his brother and once again heard: „It has nothing to do with this case. We have to concentrate on the little one.“ She phoned someone (I think it might have been the senior doctor from the ICU) and ordered the first blood sample since we stepped inside the hospital.

For 22 hours no one cared to take a blood sample!

Unfortunately that didn‘t work straight away, they had to prick three fingers until they managed to get some blood.

When the phone rang and the lab called, he had too much CO2 in his blood (he didn‘t have the strength any more to breath out properly), suddenly all moved very fast. We ran to the ICU. Two doctors and three nurses were waiting for us. I had to tell them the medical history, again and again they told me: „It has nothing to do with his brother.“ The ICU assistant doctor was so annoyed at one point she told me to finally take care of this child and not his brother.

That should only happen on TV, Grey‘s Anatomy… They took my child, told me they had to shave his head for an intravenous infusion and that he needs to be intubated. I had to go outside and the only thing I could do from now on was to wait. It was the first time in almost 17 hours, that I sat down. And it was the first time that I was crying so hard, my chest seemed to explode.

There was my beautiful little boy, surrounded by tubes and machines, tied to the bed.

They explained to me that they had trouble finding a vein, resulting in blue-green discolourations on his head. They couldn‘t find a vein on his hands or feet either, because of his baby chubbiness and didn‘t have enough time, as he already stopped breathing.

So they had to penetrate his shin-bone with a little drill, injected a sedative directly into the bone, using a long needle and intubated him. They told me that the pain of the drill would be less invasive than the intubation. By then is throat was so swollen, they had trouble intubating him. For a moment he was gone, no breathing, saturation 0%. I dare not say what he was for a brief moment… My child, my precious baby shouldn‘t have to feel pain like that!

Luckily they were able to intubate with the second try and my child was brought back.

He had infusion tubes in both hands and in one foot, for ventilation and feeding. Three electrodes were connected to his chest, on of them burned him, as it was set too high. He was on morphine but still struggling, woke up and tried to get to me, but was tied to his bed.

The tube in his throat prevented him from making any noise. He was crying and screaming silently.

I wasn‘t allowed to take him into my arms and it broke my heart.

From day two he got Fentanyl which, as I was told, was a hundred times stronger than morphine and at last he slept deeply. Every four hours I fed him my pumped breast milk through the gastric tube. At last there was something I could do.

My two other boys were waiting at home, with my eldest sons birthday coming up that week.

Those were the worst days of my life, I was barely functioning. I was sent home in the evenings to get some sleep, every morning I dragged myself to see my baby. In between, I frantically tried to keep my two other children from feeling the tear, that incident brought into our family. Luckily my husband was able to get a few days off work, so he could go to the hospital in the evenings to look after our baby.

I would like to mention at this point that the staff of the ICU really took good care of us.

They made time for us, were friendly and very attentive. They massaged his legs, talked to him, there were clowns there to sing for him. It was a terrible time for us, but made bearable by the staff there. Our son recovered extremely quickly. After three days of respiration, he was slowly taken out of the anaesthesia and we spent another 24 hours in the Intensive Care Unit.

On Friday morning my son was transferred to the children’s ward. Straight after the intubation he received antibiotics. The lab cultivated the bacteria from his blood to create specific antibiotics, to destroy them and it worked. Finally on Saturday morning we were allowed to take our son home.
Naturally he was still exhausted and on antibiotics, but we had him back at home. Only that was important to us. During the final consultation at the hospital I heard the words for the first time: The possibility that my son caught this infection from his big brother was 99%.
I was too exhausted to get really angry, especially since the doctor I was talking to now, had nothing to do with the fact, that no one would listen to me when we rushed our son to the hospital.

But it confirmed my feeling – I was right from the start!

I then asked her if all this could have been prevented if the little one had been tested for a bacterial infection right away. She said “yes” and I slowly began to realize, I nearly lost my child, just because no one would listen to me and take me seriously.

The follow-up appointment at the paediatrician really crashed me!

Our paediatrician was on emergency duty just before we had to take our child to the ICU! When he noticed, that one of his patients was admitted to the ward he wanted to visit us, but was told that we left. He was relieved, no one told him, that at this point my son had to be moved to the ICU. He was really angry. He would have ordered a blood test straight away, if someone would have showed him the patient file. After all, he knew that the brother had a bacterial infection.

Regardless of that fact, a blood test is standard procedure, at the latest upon transfer and admission to the ward. They would have seen the results, given him antibiotics and cortisone straight away and it would have been absolutely unlikely that my son needed to go to the Intensive Care Unit. I was gob smacked. The man who could have helped us to prevent that disaster was just two floors away from me all that time. I got told by NINE nurses and doctors that my objections are irrelevant. There wasn’t a single person (apart from the fantastic night nurse) who would believe me or at least tried to check if my assumptions were correct.

For 22 long hours no one ever considered a blood test!

Absolutely no one. Even though my son needed an oxygen mask for seven hours, without interruption. And the assistant doctor on duty needed to be urged 4 times – 4 times, to check on a child, who was admitted for monitoring.

How could we have been so incredibly unlucky, that all of those elements were coming together, leaving us with memories we will never be able to forget.

I know that there are many families who are not as lucky as we are. In the ICU I witnessed dramatic experiences, that I don’t dare to think about any more. But I feel the urge to be heard! Our case could have been different. Errors happen but in this case they were not simple errors, but medical personnel acting negligently and their arrogant attitude put my son’s life at risk.

I strongly believe that with the birth of our first child us parents are equipped with a sensor that makes us feel exactly what is right and what is not. We are allowed to and we must have the right to be involved in decisions concerning our children!

I am still struggling that I didn’t insisted harder on the fact that the brother was contagious with a bacterial infection. I was paralysed. Me, who usually fights like a lioness for her family, who has an answer to almost everything and can always rely on her gut instinct.
I was so paralysed and incapable of thinking, that I myself didn’t even come up with the idea that a blood test was necessary. I was on my feet for 17 hours, I had to press an oxygen mask on my baby’s face for 7 hours. I still can’t believe it. I was just functioning, and hoping, but most of all just functioning. I am infinitely grateful that my child has survived, that he won’t suffer permanent damage (at least no physical damage), that we live in a country with an efficient medical care system. But it makes me incredibly angry that all that could have been prevented by listening to us parents and doing a blood test. A blood test that is standard procedure upon admission on a hospital ward. Or by examining the child more carefully and listening to the night nurse, instead of reacting annoyed.

But now it’s in the past. It happened and I can’t change it any more. I just want to say to all parents again:

Listen to your gut feelings, be strong for your child, get involved and be persistent. Better to insist on something too much and be wrong, than having to live with regrets.

And maybe, I am not wishing this upon anyone, but maybe if one of you will be involved in a similar situation, maybe you will remember my story and you will be encouraged to follow your feelings and to fight.

Amendment:

Dear Tollabea-team,

In the meantime I had a really good conversation with the clinic management. Individual discussions were held with the persons involved and team meetings were conducted. A one-time training of the entire hospital staff will take place in January, focusing on our story. Our case will be part of internal training sessions. They will be teaching staff about this special respiratory infection both professionally, (it is a very rare condition and only a brief topic in basic training) but also teaching them how important it is to take patients and relatives seriously. Doctors will be advised to communicate better with nurses, really listen to them. For me it was a very good conversation, the medical director seemed very trustworthy and seriously interested in what I had to say. At last I can find some peace, knowing my complaint really changed things.

Perhaps this can encourage other parents and motivates you, to not just simply accept such experiences, but to make your voices and opinions heard and bring about real change.

Have you ever experienced something like this? Please let us know, we will publish your story!

Yours,

Béa