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- 25 minsTu Scendi dalle Stelle
I write these lines as a way to cope with the events of my baby-boy’s birth on Friday 19th 2021. Writing bits of text is the one thing that seems to help me escape from this terrible situation for few minutes at a time.
The following text is a mechanism to cope with a very difficult situation. I narrate a personal experience as it’s taking place. It is not a parent guideline and I am no medical professional.
If you are a parent of a neonate who has just been diagnosed with Hypoxic-Ischemic Encephalopathy (HIE) or Encefalopatía Hipóxico-Isquémica (EHI), please request a parent guide from your doctor. If no guide is available and there is not much information being given, I found this guide from NeNe very useful, however it is in Spanish only.
I would like for this entry to be somewhat hidden from the blog posts, with an inconspicuous title from a baby lullaby. I think there might be some useful information for other parents and that is the sole reason why I publish it at all. It can be found through organic searches but not by someone randomly checking my blog.
O Re del Cielo
My wife was pregnant of 9 months, the due date was on the 23th of February. We live in Finland, about 25-30 min ride by car to the Women’s Hospital in Helsinki. We have a daughter of 19 months and the coming baby-boy had a perfectly normal development during pregnancy.
The tragedy happened on an icy cold Friday morning. My wife called the hospital to mention that she felt a bit uneasy, the doctor recommended to go there and get checked. We arrived at around 9 am. I was told to wait outside as we have some COVID restrictions on how many people can be inside.
As we have had a normal birth with our first child, I was not expecting something wrong to happen. I went outside and grabbed a coffee in a nearby cafe. At around 9:30 I was told to go back immediately as they were preparing my wife for an emergency c-section. Apparently the baby had symptoms of distress due to an irregular heartbeat. It could be that the baby had hypoxia. The message was delivered in broken English with no ornaments.
As I run to the hospital, I cursed the situation and my lack of knowledge of the Finnish language. I arrived a couple of minutes later. I cursed the apparent passivity of the reception staff at the time, and finally found a nurse who made me change into hospital clothing and go wait outside the operating room. My brain was in shock already and as the message was delivered unceremoniously and through a covid facemask, I was a bit at a loss of what I was supposed to do or what was happening.
I saw Valentina, my wife, through the operating room small circular window. She was sitting sideways and being administered the epidural anesthesia. There were about 5 nurses/doctors and the room was well lit. Valentina was crying.
I felt the ground opening under my feet and a fear I have never felt before through the general confusion I was experiencing.
After few minutes I was told to get inside and sit at the head of the operating table. A green blanket covered Valentina’s body from the chest down. I held her hand. She cried and blamed herself for the situation, which I barely understood at the time. I told her there is nothing to be blamed about, we have done every step in the right way. Nothing should be going wrong and if something happened, it was not her fault.
They took the baby away, mentioned again vague words about having hypoxia. I did not know at the time what that meant, just a general idea of lack of breathing. I tried to ask for more information but they could not give many details at the time. Or maybe I just cannot remember. The conversations between the nurses were in Finnish so I understood just few common medical terms here and there.
I was taken to another room where I believe they resuscitated the baby. A doctor, the only man I have seen in the hospital up to that point, turned around and told me that there was an ongoing experimental study and that there was a drug that could help my baby and whether I would give my consent for my baby to be part of the experiment. The title of the information sheet read:
Effect of Allopurinol in addition to hypothermia for hypoxic-ischemic Brain Injury on Neurocognitive Outcome - A blinded randomized placebo-controlled multi-centre trial
Those are the most terrifying words I have ever heard or read. Even at that point - now around 10 minutes after c-section I think - I had little idea of what was at stake. I just knew that the last hope of a normal birth faded. The shock overcame me.
I asked more information of what was happening and the doctor explained that the baby had hypoxia and little or no blood flow went to his brain, likely causing brain damage. I didn’t know it then but we had been very unlucky as it happens once every thousand births. So, so unlucky.
I consented to the drug - allopurinol - or its placebo and spent a few minutes there. The baby was flaccid and the few signs of life were that it sucked a bit the finger and barely grasped. His feet did not move, no reflexes I could appreciate. A normal birth usually is noisy as the baby bursts with life and anger to the world, crying scared. This boy did not move nor cry. I wept in silence.
We followed the Finnish custom of waiting a bit before naming babies, thus the little thing did not even have a name.
I went back to the operating room and crying held my wife’s hand. She already knew what was happening, better than me. I consoled her and tried to tell her that this things happen and lied to her and myself telling her things will be normal.
E Vieni in una Grotta
The hospital is a labyrinth and it has many different elevators going to different floors. The maternity ward, where the mother recovers from childbirth, is on the 6th floor. The baby was in the Neonatal Intensive Care Unit on the 3rd floor. As there is some construction work going on you cannot take an elevator from 3rd to 6th floor, you have to go down on the 5th floor and walk 100 meters every time, also ring a couple of bells every time and wear the mask at all times. Due to covid only one parent at a time can be in the Neonatal Intensive Care Unit (NICU). That was the unpleasant part.
The NICU itself has top nurses and doctors, and very modern facilities. They treat intensive care babies but also premature ones. At all times the nurses and doctors gave the care that my baby needed. They are blessed a million times and if there is heaven they are all going there. The staff and the high quality of the care provided was the physical constant that gave me hope that we could make it through the ordeal.
The NICU has several rooms, ours is number 16. In it you may have up to two babies at a time and one parent per baby. When I got there I saw him intubated, with several cables and machines attached to him. Meanwhile my wife was being stitched three floors above.
The baby weighted 3.4kg, was warm and as I said he almost did not move at all. At some point he cried but the tube through the larynx prevented any noise, his face was that of pain. That was actually relieving. Some feeling is better than no feeling.
I was told the baby had a low “Appearance, Pulse, Grimace, Activity, and Respiration” or an APGAR score of 2/3/5 (1min, 5min and 10min). That the umbilical pH value was 6.95, that the BE value was -14 and that the blood lactate value was 18.4. Few hours after birth we were told the S100B levels where >200.
Those values now make some sense but when you hear them for the first time they give little explanation. By the way, about the S100B, it is not a good sign to have twenty times the maximum recommended amount but the rate of decrease is more important than the initial value.
After the short oral consent and the tests, the baby started a hypothermia treatment, which lowered his body temperature to 33.5 degrees celsius. It seems that this is the only therapy available for babies with Hypoxic-Ischemic Encephalopathy (HIE). The treatment starts within 6 hours from birth.
Al Freddo e al Gelo
The medical machinery the baby is in constantly pumps and makes noise. It is at first scary but after a few days it gives some comfort to know that some precise mechanical artifacts constantly give the exact amount of everything to your baby. In my own words, the machines were the following.
First there is the Braun injection device, the baby has two of those. The device has 4 pistons or injectors which are slowly and gently pushing the right amounts of the respective liquids into various parts of my baby’s body. Sometimes the navel, sometimes the arm or the leg. One is for glucose at 30% which is the food the baby needs in addition to the mother’s milk, they give him 3.5 ml per hour. They also give him heparin to prevent blood clots, they give him 1ml per hour through the navel, same thing through the arteria. Fentanyl is also administered at 0.48 ml/h to sedate the baby and to control blood pressure.
There is another screen from Somanetics that has a graph monitoring the oxygen saturation of the brain, it was around 80-87 all the time.
There are two big monitors that present the heart rate which was around 95 to 120 (due to the cooling process), the oxygen saturation which was around 100, the blood pressure which was around 50 mmHg and the breathing pattern which includes apnea cycles and inspirations, which are around 40-60 per minute, with rapid breathing.
There is a respirator from Dragger which I did not look at too much in details but that essentially helps push a little bit more air into the babies. I was told the baby could breathe by himself but that during the cooling process they kept the respirator just in case.
The cooling is achieved by means of another small blue box with little wheels that pushes air at 33.5 degrees celsius on pads around the baby’s body. The temperature is dropped slowly at around half a degree per hour and is later warmed at a similar rate. The skin temperature is measured with 2 or three sensors stuck on the skin and the basal temperature is measured with a small anal probe. By the way, as all parents know, the baby first expels the meconium (a tar-like poo that gets stuck to the skin): cleaning everything and the probe is a fun activity.
There is also a camera and a computer with keyboard, mouse and screen that is attached to electrodes that go to the baby’s head. They don’t go deep, don’t worry. They take an electroencephalogram (aEEG) of the baby’s brain activity, also for the Albino study. It should be mostly regular except in times of very high excitement or seizures. The baby had one seizure the first night and everything went crazy with that screen. They gave him phenobarbital to lower the brain stimulation and calm him. I was told there might be seizures during the warming, but that the baby can also be more relaxed as it is warmer, and he will hopefully be more awake.
The crib is small and comfortable, it has a heating panel on top of it. The baby’s position is changed every few hours to avoid bedsores. Baby has a couple of tiny tubes going down his nose and larynx to the stomach and lungs. The lung ones are for the respirator and to drain the lungs of liquid and amniotic fluid (hopefully not much after 24 h) and the stomach one is for food. The respirator tube tends to accumulate liquid and needs to be emptied every few hours. Other than glucose, the baby receives few milliliters of dutifully pumped mother’s milk. If you see the milk it looks yellowish as it has high fatty content. It just goes down by gravity into the baby’s tummy. He seems to like it. At some point I had to spread a bit of mother’s milk on his lips, the baby reacted to it with a smirk.
There is also a chair and another table with a computer and a specific software to write down details of the progress of the baby, it is called Apotti. Nurses and doctors write there all the readings of blood tests and specific events of the child’s time in the NICU. Parents can read some of it on their own through https://www.maisa.fi .
There are also a chair and a bed. The bed is by the window, hidden by a folding screen. We spent the days and mostly the nights there ruminating. The room sounds like a computer server room, with the motors of the various machinery, and the ventilators cooling the many processors recording and processing measurements.
This set up is in every room out of which there are 22 I think. At the beginning it was easy to get lost as everything looks the same in the long grey corridors with the same masked nurses, white emergency doors and wooden NICU doors. Now I can go about like any nurse.
The NICU floor is very clean and well taken care of but some other parts of the hospital seem run down and disorganized. For example I was told to use the stairs as they were repairing some floors and the elevator did not work. I went down the stairs but then couldn’t get in again and after waiting and knocking I had to go all the way down to take an elevator, walk 100 meters, take another elevator and go back where I was. I noticed all parents had troubles with these things.
O Bambino Mio Divino
The emotional process of accepting the news has been the worst experience of my life. By a long distance. To compare, another painful experience was when I had a testicular torsion as a kid. I remember the excruciating pain the hours before being treated. Now, I would happily and cheerfully suffer that for years if I could have the peace of mind of knowing that my child’s brain would be fine. The mind-pain is excruciating and superior to the physical pain.
The first minutes you receive the news that your baby is very sick, that he might become mentally impaired for life or even die. There is no way to cope with the first minutes. I can think of no training nor of any advice for the first 24 hours. It is cruel, it is a surreal unbelievable nightmare.
There is an emotional rollercoaster during the first 72 hours, panic, anxiety, fear, happiness, confusion, incomprehension, uncertainty, frustration, anger… It is common for parents to enter into depression in a matter of hours, lose appetite, act erraticly, thinking constantly at what could have happened and what may happen in the future. Thinking about the pain that this fragile baby has endured, thinking about his state, the painkillers, drugs and catheters as well as the bleak future ahead is excruciating. I fear this will haunt me for life.
We were constantly crying. Back in our room I could only keep my mouth open making loud weeping noises. For minutes and hours. Thinking about my poor baby. Mi pobre hijo, en una camilla, drogado y frío. Un tesoro del cielo que tiembla inconsciente. Toda esperanza y toda fe perdida.
After some time I started some form of grieving process for a healthy child that never happened.
I thought about how perfect our life could have been had we arrived an hour earlier, perhaps only few minutes! The first morning I hold on to the hope that somehow things would be better. I had a constant deep fear, un dolor profundo y hondo. Lágrimas y saliva se mezclaban en mi boca. Pero luego perdí la esperanza. No hay manera de expresar el dolor. La cara de piedra que se te queda.
At some point, when all hope is lost, I prayed. I think that regardless of faith, creed or beliefs everyone prays to God in these situations, it is an entity rooted in ourselves that you try to awaken in extreme situations, a primordial entity.
So you pray. We pray because there is absolutely nothing else on this world that we can do. I prayed more intensely than I ever did, I begged to God with a clean heart and I sincerely offered everything I had, health, limbs and life for an improvement of the baby’s condition. I cried my heart out. After extenuation, you may fall in a light sleep for few hours.
This pattern goes on for at least a few days. There is nothing normal about it, your face will sometimes be numb from crying and other times when you tell what has happened you will become wobbly and fall apart. But you have to be strong and go on, you hear me? BE STRONG. You need to do that for your family, for your baby. Be strong, look at the very short term for now and that is it.
At some point there will be some preliminary conclusion of the ordeal when the electroencephalogram (EEG) and the magnetic resonance imaging (MRI) are done. Before that, everything can happen.
Io Ti Vedo Qui a Tremar
Reading about the topic in this situation does not help. Normally the more information the better, and while I think it might be useful to know about the machines that help your baby and even about the medical terms, it is not good to enter the statistical realm. It feels like a madman’s lottery. It is better to focus on every moment, little by little. Focus on your wife/husband, focus on finding some relief of the pain, take drugs to relax if you have to, force yourself to eat if you have to. Focus on your baby, talk to him, whisper words and caress him.
I sometimes read to him the Æsop fables, or sing Tu Scendi dalle Stelle and other lullabies. He seems to like when I place my hand on his forehead and I tell him what is going on.
If you have to know more, please ask your doctor. I am just writing from the point of view of a suffering father, I am no doctor, no nothing. I read literature I should not have read in this situation, and believe me that it does not help. Knowing more cannot change anything about the state of the baby, but it can change your state of mind for the worse.
In all likelihood you too will have spare time in the long nights and will ignore this advice, because you need to know what is going to happen, because it is your baby, you want to know and understand. What I learned was grim.
The HIE classification uses three grades: mild, moderate and severe.
The outcome of babies with mild HIE is good (almost 100% of patients are normal at follow up), less than 5% of babies with mild HIE will have a severe handicap. This is the best possible HIE, which was probably treated during the first 30 to 60 minutes after the injury. You can consider yourself lucky if you get this HIE.
The outcome for severe HIE is bleak, I will write no more about it.
The situation is more complicated for babies with moderate HIE where the rates of poor outcome reported in the literature vary from 20% to 50%. In old studies between 1980-2000 about 52% of babies with moderate HIE had normal development the first year, the rest died or had serious impairment. This terrible statistic is disheartening but the studies don’t seem very complete.
Other sources point out that about 40-50% of the infants with moderate or severe HIE (i.e., 2500–10,000 infants per year in Europe) die or suffer from permanent and serious brain injuries. Hypothermia applied within 6 hours from birth offers some protection with modest improvements.
Alternatively, a more precise way to decribe a baby’s HIE is the Thompson score, which assigns a numeric score based on the reaction, posture, grasp and other reflexes of the baby.
Aside from being life-threatening, neonatal hypoxic-ischemic encephalopathy (HIE) causes permanent brain damage. Once it is confirmed, there is no cure for it. Cooling only prevents further damage. It seems - to me - that the brain does not really regenerate in any case. Again I am not a doctor, I am just reading the literature.
There are also several biomarkers that may give you some insights on your specific situation, however as this is very rare, it is still relatively under study.
I could provide a detailed bibliography of the dozen papers or so I found relevant to my case, mention EEG, MRIs and other sources of information. However I really, strongly think it was counter-productive during the first days. So I will not do that. Sometimes is better not to know for a while.
O Dio Beato
As mentioned before, having very good medical care is mandatory to even start thinking about improvements. If hypothermia treatment is delayed, if the c-section happens too late, if there aren’t any good nurses and doctors or equipment, if, if, if.
Besides talking or singing to your baby, the second best thing you can do is to talk with your family and friends. I spent ours on the phone, as my family is in Spain and could not be here. I spent hours hugging and crying with my wife.
As for the couple,it is common to offer more support to the mum and everyone will tell the father to help her. The father may often be sidelined and perhaps even ignored at times. I think both parents suffer equally from this and in our case my wife is emotionally stronger than I am. Support each other.
Another thing that I have noticed may help, but that is counterintuitive; it is to postpone full relaxation. Of course it depends on the situation, check with someone first. In our case we have a daughter and the first night I went home she was sobbing and crying for papa, not knowing where we were, wanting attention and care. It may seem a good idea to go back to your home from the hospital but I think it is worse. You should not be driving around in your current state, moreover the impression of normality will create an emotional rollercoaster that will tear you apart every time you have to go back to the NICU. So I think a hotel close to the hospital and arranging to do turns with the wife is a better idea.
It also helps to think that right now there are dozens of family members and friends whose thoughts are with you and your baby. There have apparently been entire churches in Spain praying for my baby. I feel we are not entirely alone in this. It is important that you open spiritually, cause it will alleviare il dolore.
It helped me to notice after hours of crying that the love for my wife, my daughter and my baby boy also increased. You will appreciate them more intensely. You will feel a lot more love for those closer to you. I think it is a natural compensation for the pain you are being inflicted. It gives strength to continue.
Your state of mind should focus only on the immediate next thing to do, and not on medium or long term events. To be occupied you can listen to classical music, read or write.
Io Ti Vedo Qui a Tremar
As I said at the beginning, I write this for multiple reasons:
To occupy my brain with something. I spiral out of control into despair if I don’t try to sail through the turmoil by doing something. For example writing. Alone I type and weep, type and weep.
To document what has happened and is happening for myself, so that maybe one day I can go back to it and remember it as a far away memory of the worst life experience imaginable.
Perhaps for a parent like me that stumbles upon this. I hope you can get some solace in knowing that you are not the only one, that this terrible path has been walked before by other anonymous suffering parents. Others like you were shocked by the circumstances and pushed forward the best they could. Perhaps you can get some advice, or perhaps I am only dropping you a bomb when you were just given the news. I sincerely hope for you, dear reader, to never ever have to go through this. And if you are already in this nightmare, I hope you awaken from it soon and with fortitude.
I wish for my baby to be healthy with all my mind, body and soul. I pray for him and for all babies in this situation. I pray for their parents and for their siblings and friends. God please help us.
Ahi, Quanto Ti Costò L’avermi Amato!
It is Wednesday now and it has been exactly 5 days since Giacomo was born. This 5 days feel like a month worth of time and at the same time like one very long day. Tonight I spent another restless night with him, he was able to drink milk by himself and he opened his little grey eyes several times.
In the morning they took him to perform an MRI, which gave us more information on the state of his brain and his HIE. As I mentioned before with moderate HIE the outcomes vary greatly.
…
The preliminary MRI results are now very positive and they are ready to move him out of the NICU into another hospital.
I have no words to express how it feels. Collapse, happiness, terror and fragility. My thoughts are of course with my two children but even more with other parents that have to go through this. I pray for them to have strength of mind.
We do not know what the outcome for Giacomo will be, there are still many months ahead of observing his development. The first obstacles have been overcome, there will be many more, but today my baby has been born a second time.
…
It now 19th of November and it has been exactly 9 months since Giacomo was born. During this months we have lived a steady improvement of the situation. From very regular visits to check the fat necrosis on his back, calcium levels, and general development to not having to worry about the physique of the baby anymore.
The evolution has been remarkable, so much that the neurologist and physiologist had confirmed we no longer need regular check ups. I am very optimistic about Giacomo’s growth, he grabs things, starts to makes proper sounds, crawls around with confidence and seems overall a pretty normal baby. I still have some doubts about things like brain development but I am not worried anymore. I think we will be fine.