my story

The Birth

My name is Francesco Ugo Locatelli and I was born on January 27, 1998 at the Clinic Sant’Anna of Sorengo in Ticino (Switzerland).

I weighed exactly 1000 grams and I was 32 centimeters long. My "apgar "was 4/4/7 and my gestational age was 25 weeks and 4 days. My birth was spontaneous.

The story of my premature birth began one day earlier, the 26th of January. That Monday Mom didn’t feel well, she complained of contractions and blood loss. She contacted her gynecologist, but he was on vacation, so she decided to have his substitute, a well-known gynecologist in Lugano, exam her.

The gynecologist, after an ecography, reassured her, prescribed tocolitics and sent her home with the usual recommendations for premature contractions; avoid using force, stay calm and above all don’t worry.

That night the contractions became stronger and Daddy decided to have Mom admitted to the hospital. At the clinic they used the normal procedure in cases like this, tocolitcs intravenously given and antibiotics for a suspected vaginal infection. At 9:30a.m., Tuesday, morning her water broke. The gynecologist told my desperate parents that in all probability I would be born dead. The doctor was sincerely very sorry and seemed very embarrassed.

They took Mom into the delivery room and when the contractions became stronger the obstetrician arrived to help with the miscarriage. Mom cried out with pain and Dad held her in his arms. It was 10:24 a.m.

In spite of what the doctor said, I DIDN’T WANT TO DIE, and as soon as I came out of Mommy's womb I started to cry as loud as possible. They had to hear me! The obstetrician realized I was crying and took me away, running. I heard my Mom crying and struggling from far away.

I don’t remember much about what happened the first 15 minutes, before they presented me to my parents. They told me of an excellent Italian neonatologist who injected my lungs with a surfactant (Curosurf), and put in a breathing tube (so a machine could breathe for me). I remember when he told my stunned Dad, "I couldn’t let him die!". Thank you, Doctor, for believing in me.

 

My first photograph.

 

Arrival in Bern

At 3:30p.m. a big, red helicopter from REGA arrived with a doctor and nurse aboard from Inselspital of Bern. After putting me in a transportable incubator and into the helicopter we took off at 4:00p.m.

I don’t remember much about my arrival in Bern into the Neonatology Intensive Care Unit (NICU). I know that Dad came to see me the following day and he spoke with a doctor.

The Assistant who spoke with Dad was very explicit and described all the problems I had. He spoke for a long time of the grave risk of my being handicapped. He also spoke of the small possibility I had of becoming a normal baby and person. I remember he said to my Dad that it would be a miracle if I became "normal", but an Einstein I would never be. This kind Assistant, originally from Ticino, also said they (Inselspital) didn’t like to see handicapped babies leave their hospital.Dad didn’t understand completely what the Assistant wanted to say. They spoke also of perseverance in therapy, but I don’t think they intended the same.

The doctors in Bern, after the first cerebral ecography, verified an intraventricular hemorrhage (IVH) grade 1, not grave but to keep under control. More serious hemorrhages of this type can cause a idrocefalus (water on the head) or a periventricular leukomalacia (PVL), small holes in the cerebral tissue) or death. It seemed that things were going quite well considering my grave prematurity.

 

 The NICU in Bern

The CPAP

The breathing tube stayed in for only 2 days. I’m telling you this because premature babies like me, generally, need a breathing tube for much longer. The breathing tube can cause damage to the lungs and us premature babies already have such small, malfunctioning lungs that avoiding additional damage is vital.

I still needed oxygen, according to the doctors, with pressure to keep my lungs open. In cases like this they use what they call the CPAP. CPAP is the abbreviation for "Continuous Positive Airway Pressure" and can be used in different ways; with a tracheotomy, raising the ventilator tube to the level of the trachea and maintaining a continuous pressure in the lungs, or; with the universal method that consists of putting   small, rigid tubes in the nostrils, with that inserted into a rigid, transverse tube.

The CPAP was terribly big and they inserted it enlarging my nose. My delicate skin didn’t tolerate this treatment and after two days began to form a painful sore. Every 4 hours they had to take me off the CPAP to clean my airways with a small aspirator, using a small tube that descended to my lungs. I would stop breathing and the nurse would have to start my breathing again with an AMBU, then they would reattach the contraption (CPAP) and lay me down on my stomach.

During this time, at regular intervals, I would stop breathing and my heartbeat would slow, the nurse would arrive, pat me on the bottom and I would remember to breathe. In general, apnea spells are fought by using coffein or teofillines and with slaps on the bottom or in difficult cases, with pinching. In Bern they chose the coffein option.

Perhaps you don’t know that in our brains breathing regulation is trustworthy only near the 34th week of gestation and us seriously premature babies don’t yet know how to breathe on our own. These frequent episodes called apnea spells and brady's (slowering of the heartbeat rate) are also indications of the state of our health. If these episodes increase, something is happening and the doctors can intervene.

Returning to the CPAP. Like I said, it began to hurt me a lot and after 2 days my little nose was starting to swell.

Saturday, when my parents arrived, the CPAP was already a torture and I often tried to take it off. I think I managed too, sometimes. Anyway, my parents brought a cassette tape of their voices and one of mamma’s heartbeat, recorded with the help of friends in a professional studio. They wanted to recreate, in my incubator, the feeling of being in mamma’s womb.

A nurse asked my parents for permission to film me and to use the film for research of a technique called "base stimulation". My parents gave their consent.

Dad and Mom were very frightened seeing my nose and asked for an explanation from the nurse and the shift doctor taking care of me. The answer was very simple, they all said it was normal, that almost all premature babies develop that type of necrotic nose (decay of nose tissue). They said a small plastic surgery would resolve the problem. My parents were worried, above all, because they saw me suffering, but the assurances of the doctors did calm them somewhat. They decided not to take any photographs of me, they didn’t want to document my immense suffering.

The picture of my nose are taken from the nurse's film. The "bridge" was made by a nurse who refused to insert the CPAP, and decided to do something. It was too late, I didn't need the CPAP anymore.

 

  Why?

 

My parents came from Lugano 3 or 4 times a week (200 miles away, in winter, through the alps, in a german speaking state. This created a lot of communication problems to my Mom!) and stayed in Bern on the weekends. Mom pumped milk like crazy without great results, but I consumed very little. I was fed with a feeding tube . Mom could freeze some milk and bring it with her or send it express. Every time they came to see me, they found me suffering more than before and my nose more swollen and destroyed. They didn’t understand.

Mom also tried "Kangaroo Care" (which consists of putting the baby on the mother’s stomach to recreate the feeling of being in the womb and create a bond between mother and baby). I think it works, but Dad prohibited it. I suffered a lot. In his opinion, the benefits of "Kangaroo Care" didn’t outweigh the suffering being inflicted on me by the CPAP..

I weighed 850 grams at this point.

The BPD

After about 2 weeks (The dates are not exact, with Dad too busy driving and Mom pumping milk day and night, they didn’t have time to keep a precise diary), came a pathology typical of prematurity. The BPD,  bronchopulmonary Displasia, a very serious diagnosis. It is a serious inflammation of the lungs with destruction of the alveoli and thickening of the bronchiole walls. A pathology discovered less than 30 years ago following a RDS (respiratory distress syndrome). With the BPD the exchange of gas (02-CO2) doesn’t occur normally. Lungs stricken by BPD need more oxygen, but abundant oxygen is a poison that worsens BPD. A vicious circle that can last years and that can require long periods of ventilation, strong drugs, or oxygen therapy for a long time.

My apnea spells and brady's were increasing, almost all signaled in red on the chart, those that required stimulation. They did an x-ray of my lungs and according to the pneumologist the situation was very serious. They decided to take me out of the resuscitation program. Clearly, they had decided that I wouldn’t be resuscitated if it became necessary (in clear: No more ventilation in case of necessity). For a premature baby like me, this was a DEATH SENTENCE. My "judge" had decided to condemn me on the base of an x-ray.

In fact, he asked my devastated parents if they wanted to have me baptized the next day. They could organize the baptism with the Italian mission. So they did. That next day, the 15th of February, an Italian priest and nun arrived and they baptized me quickly. I think they also gave me my last rites. They did this while I was pulling off the CPAP and two nurses and a doctor were reattaching it. I cried and defended myself like a possessed person. It took 20 minutes to reattach the contraption. The priest left, running and scared, followed by the nun who had been reduced to tears. Dad had to run after them to make a donation to the Italian mission.

My nose situation was getting scary.

They started the fight against the BPD the same day. They gave me corticosteroids (Decadron) by vein injection and strong diuretics (lasix). In a few days the apnea spells and brady's situation had improved a lot. After 3 days I almost didn’t need the CPAP, it was enough to have a bit of oxygen. In your face "judge" , us from the south have heads as hard as rocks and we don’t give up easily.

After 10 days the doctors (sic) reconsidered their death sentence and put me back in the resuscitation program. My Mom tried "kangaroo care" again, and this time it worked a little.

 

The first "kangaroo care."

 

The NEC

The second violent descent on the roller coaster of prematurity. Maybe the worst. The one that leaves one-third of us serious premature babies without hope. The NEC, necrotizing enterocolitis. A part of our intestine, due to lack of blood irrigation or a pathogenic agent , necrotizes (dies or decays). The necrosis can make a hole in the intestine and finish in peritonitis. Peritonitis along with a weak physical situation is often fatal. Sometimes it is possible to operate in time and after a month put the intestine back together. The possibility of survival is very low.

Sunday evening, March 1, Mom and Dad, who had returned home in the late afternoon, made the usual telephone call at about 11p.m. Dad hadn’t left Bern very convinced. By now, used to the monitor, he had noted a series of unusual events and spoke with Mommy. He wasn’t tranquil. The answer from the nurse to the telephone call froze the blood in my parents’ veins; possible NEC, they were looking into it. I had a fever of 40 degrees centigrade, I continued to cry with my feeble voice and my stomach was swollen like a balloon.

Dad and Mom arrived the following morning and found me under the vent. Strangely, I had escaped nicely. If the NEC had arrived 3 days earlier, I would have died. They wouldn’t have put in the tube. I had to fight against the NEC, but at least I had a chance. Every six hours, the surgeon arrived, like a vulture, to check the diameter of my tummy and to decide if I needed surgery. In the meantime, they were giving me massive doses of antibiotics. They also performed a transfusion. I remained with the tube for more than 20 days but I recovered from the NEC. Of course, not without some intestinal scars that, perhaps, one day will need to be removed. Hoping that first, my intestines don’t become blocked. Because of the vent, the BPD had worsened a little. This was the price to pay.

The NEC

They took out the tube on the 22nd of March. The doctors always fear this moment, not knowing how the babies will react. Naturally, the use and pressure of the ventilator is diminished gradually. Fortunately, everything went well.

I continued to take coffein even if the apnea spells and brady's had diminished and I continued to need oxygen, from 25 to 40% depending on the moment. (the air we breathe has 21%). They gave me oxygen with a small tube applied under my nose or with my head under a humid pan.

After 3 days they transferred me into the intermediate care.

INTERNET

You may be asking yourself what Internet has to do with all of this, and why you are reading my story here. Dad was connected to Internet in his office and one evening while he was looking for information on premature babies, he found a website called "the preemie ring." It is composed of more than a hundred websites of parents with babies like me connected in a "ring". He found more than 10 websites of premature babies with a gestation age less than mine and about 20 babies like me, born between the 25th and 26th week of gestation. All the sites included photos, diaries, etc. Contrary to the affirmations of the medical staff in Bern, Dad didn’t find anyone with a destroyed nose. All the noses of these babies were perfect. Only one site spoke of nurses feeling nervous for an irritation of one baby’s nose. This particular baby had stayed on the CPAP much longer than me. The photos of the babies with the CPAP showed a cure much different than the application of the device used on me. Dad showed the photos and documents to Mom and both became very angry. They understood that the medical staff in Bern lied and had continued to utilize that CPAP incorrectly to cover their lies.

From that day onward, my parents took the situation in hand and presented Bern with the documents. Documents that showed up everything, including the medical staff in intensive care. Mom and Dad asked questions about everything and contested what had been done. They asked for all the clinical charts and they checked them and made suggestions. They knew they had to get me out of Bern alive. The doctors would have continued to follow strictly the procedures and not do anything more to save me. After all, it was my fault, not theirs, I was born premature.

The Bad News from the Nice Primary Doctor from Ticino: ROP, PVL

I was transferred into the intermediate care department in quite good health for a premature baby of 25 weeks. The oxygen consumption was diminishing slowly and the apnea spells was occurring rarely. I began to eat a little with a bottle. Once or twice they attached me to Mommy's breast and I liked it a lot. Mommy's milk was disappearing notwithstanding everything she was doing. When Mom took me in her arms, Dad held the oxygen tube and I could stay a bit with her. She was happy and so was I.

 

Happy!!

 

Dad knew that they should give me an eye exam and was amazed that they hadn’t yet done so. It is recommended that the exam of the ROP (retinopathy of prematurity) occur 6 weeks from the date of birth or at the 33rd week if the baby was stable, since the exam is somewhat invasive. I was stable and I was entering the 34th week. Anyway, in intensive care they seemed surprised and very embarrassed. Meeting the Professor Primary Doctor of intensive care Dad asked why the exam hadn’t yet been done. The ROP, if not taken care of, can cause blindness or very serious visual impairment. It is something very important. The Primary Doctor answered that he "thought" it had been done and that he would take care of it immediately. Anyway, now I was in intermediate care and the exam would take place. It was scheduled for the next week.

The Primary Doctor of intermediate care, in the meantime, wanted to see my parents to bring everyone up to date on the situation. Thursday the 26th of March he described my situation to my attentive parents, beginning from my head.

At the neurological level I was normal. I was acting like a baby of my gestational age and the intraventricular hemorrhage had been stopped at grade 1. Surprises weren’t expected.

For my eyes and the ROP, my parents shouldn’t worry he said. In Switzerland the statistics were favorable and the previous year not one premature baby had lost their sight because of ROP. A good excuse to cover the forgetfulness of the intensive care staff.

He elegantly "skipped" discussion of my nose.

He described the heart situation as good even if they weren’t sure if the Bottallo duct (PDA) had reclosed completely. Sometimes you could hear something and sometimes you couldn’t. Dad asked why they hadn’t done an ecodoppler for confirmation, he knew that an open duct worsen the BPD. The Doctor uncomfortably skipped this subject, again.

The pulmonary situation was serious but not grave, he hoped that it would improve quickly with the diuretics and the inhalation of ventolin. Anyway, it dealt with a BPD of which healing time is uncertain.

He spoke of the intestine stenosis left by the NEC, and suggested the intestine be kept under tight control to avoid an occlusion (blockage).

Mom attempted to bring the Doctor back to the nose but he responded in an evasive manner. All the doctors knew that in intensive care they had made some big mistakes and now, they treated my parents with kid gloves. The intensive care staff elegantly avoided and tossed the "hot potato" to the staff of intemediate care and the poor Primary Doctor from Ticino.

The 27th of March the opthamologist examined my eyes. Dad was in his office in Lugano. The Primary Doctor called Dad on the cellular phone and with a sorry voice announced that I had ROP in both eyes. One eye with level 2, perhaps level 3, and the other level 2. Not grave, but serious. A 3+ requires surgery, a 4 you practically lose the eye, and a 5 you are blind. He told Dad they would keep my eyes under careful examination every week. In addition, Inselspital would arrange for an excellent opthamologist and if necessary, would perform the surgery.

I continued, even if slowly, to improve with the oxygen. A few days later, a Doctor announced to my parents that the Primary Doctor wanted to see them. Mom and Dad weren’t happy, they knew that when the Primary Doctor wants to see you it’s generally to give bad news.

The 2nd of April my parents met with the Primary Doctor and an assistant. The Doctor began with this phrase "I have some bad news to give you and I’m very sorry."

At the latest cerebral ecography they had found cerebral lesions. A periventricular Leukomalacia (PVL). A true bomb, the feared cerebral lesion, the handicap more or less grave. My poor parents were dumbfounded. The Doctor said that I would have all the support possible, that perhaps only the motor part of the brain was affected and  perhaps the cognitive side would have little damage. He couldn’t predict the entirety of the handicap or which handicap I would suffer. My parents didn’t have words to reply. They took the blow and went home.

Dad didn’t understand. From what he had read, things didn’t add up. The leukomalacia generally appears as a consequence of a periventricolar hemorrhage of grade 4 or prenatal trauma. The first 2 ecographies were fine. Why the third time, after 2 months did the leukomalacia come up??

Dad looked frantically on Internet for research, news, anything that spoke of leukomalacia and he found something. He found a correlation between stress, pain, and ischemic episodes. In fact, for certain cures or invasive manipulation morphine is used, also for premature babies like me. Dad found out that less than 10 years ago medicine believed that premature babies didn’t suffer because of the incomplete formation of the nerves, instead it is now known that the incomplete nerve formation sharpens the sensation of pain spreading it throughout the body, he felt sick.

Sick of science without a heart and dismayed by so much stupidity. He asked for and received an urgent appointment with the Doctor. Dad  grabbed the poor Doctor by his lapels with these words: Doctor, I am convinced that the stress and pain due to the necrosis of the nose and improper treatment of my son caused the ischemic episodes that have been determined to be leukomalacia.

The Doctor sank down on his chair and with his eyes looking at the floor, answered: Yes, it is very possible. Poor Doctor, he didn’t deserve my parents anger.

Dad, in fact, very possibly was right. During every "treatment" of my nose, I cried and struggled with all my strength, sometimes "the treatment" lasted a long time and I got very tired and my successive apnea spells and brady's became stronger and needed stronger stimulation, as documented by the study of the base stimulation done by the nurse (at one point the nurse wrote that I wasn’t moving spontaneously, except for moving my hands towards the CPAP.) These strong and prolonged apnea spells deprived my brain of oxygen and small parts of it died. The organism then works to take away the dead tissue. This was the reason for the "bubbles" in the brain.

Dad was very, very angry, Mom was upset, but they had to remain calm. I was in their hands.

Anyway, one episode which exemplified the methods of Inselspital:. The nurses had orders to turn off the machine (the one which indicated the heartbeat frequency and the level of oxygen in the blood - pulse ox) when the parents arrived. To give oxygen to a baby with a flying tube at 2 liters per minute is almost impossible when you don’t have indications of the level of saturation of the blood. You either give too much and ruin the lungs or too little and risk episodes of lack of oxygen with different possible damages.  At a minimum , over time, you can cause pulmonary hypertension often irreversible and often fatal. The generic excuse of turning the machine off was they had to get used to watching me and understand my color. Clearly, if I became blue, give me oxygen. Valid recommendations if the need for oxygen is small, but absurd with a broncodisplasic like I was. I flirted with 45%-55% of need and I was very irregular. I became blue in a minute. No one respected "the order" to turn off the machine, until the day a zealous nurse didn’t turn it off. Dad was scandalized with these procedures. He was furious and with his weight of 120 kg and height of 1.95 centimeters he could cause fear in others. After the intervention of the Primary Doctor the machine remained on at all times,

 

I'm a fighter!

 

After 2 check ups with the outcome quite good, the third was not good news. The ROP of one eye had reached the 3+ level and needed surgery. No one really knew why the ROP develop. Because of the prematurity certainly! It seems that also the oxygen that many premature babies must use to live is one of the major reasons of the development of this pathology. The pressure in the capillaries of the eye are different and they develop in an abnormal way and detach the retina. Usually an intervention with the laser or the cryo surgery is used.

The surgery was scheduled for the following Monday and required ventilation . A ventilated baby must return, if only for a brief time, to the intensive care and the Doctor knew quite well that my parents would have never accepted this. The operation in Bern, yes, but return to intensive care, no. The law was against the Doctor, he couldn’t take care of me if he didn’t have the authorized personnel. The Doctor did his utmost to have me transferred to Zurich and have the operation there as soon as possible with the opthamologist of Zurich.

He was successful, even if the transportation costs had to be paid by my parents. A helicopter is expensive (3,750 SFR). Anyway, at 4:20p.m., Friday, March 1st, the helicopter landed on the roof of the KINDERSPITAL of Zurich, with the intensive care nurse who had constructed the bridge for my nose on board. (A very dear thank you from the Primary Doctor from Ticino). In the meantime, my parents had just finished their first trip to Zurich, after 45 trips to Bern (28000 kilometers in little more than 3 months. In total, They drove more than 35,000 kilometers during my stay in internal Switzerland. )

ZURICH

Tuesday morning, the 4th of March, I was operated on with the cryo surgery, vent in and out without problems. The operation went well but they still had to keep my eyes under control. Especially the one which hadn’t been operated on.

In the meantime, the specialist ORL arrived to check my nose. As soon as the Doctor saw the damage he asked permission to photograph me with a special machine. The photos could be used in his courses. He described how he would intervene in stages to reconstruct my nose. What a mess! He said these words to my parents in good Italian: When I see something like this I am not proud of being a doctor! Much more than a small plastic surgery like they asserted in Bern.

God, what liars!!

 

Zurich

 

My stay in Zurich continued tranquilly with the highs and lows typical of a premature baby. I grew and my consumption of oxygen lessened. Only my heart had some problems with a strong tachycardia (180-200 beats while I was awake and 150 during sleep). I remained in Zurich for more than one month and then came the day when I could try the great leap of returning home. I still needed oxygen, even if it was a small amount and I was still taking strong diuretics (Aldactone and Esidrex) , I continued with inhalation of ventolin, with the effect of increasing the tachycardia. But considering everything, I was doing well, also because I had avoided, miraculously, the reflux typical of prematurity. One small thing bothered my parents. I had an inguinal hernia that was quite evident. The Primary Doctor in Zurich wanted to operate only if really necessary, he wanted to avoid putting in the tube again. I would bring the hernia home.

Dad and Mom got an oxygen tank for home and one for transport and emergencies, but decided and asked if I could be brought for a few days to the Clinic Sant’Anna so Mom could get used to the procedures needed to take care of me. She didn’t really need to, but she felt insecure.

Poor parents, they knew they would have to take a resuscitation course (CPR) or at least this is what they do in the USA where Dad got his informations. Here they were with a seriously premature baby and they were without support of any kind. They had to organize everything alone. There wasn’t even an AMBU available (they wouldn’t have know how to use it anyway). After 4 days at Sant’Anna, the 30th of May, I finally arrived home.

 

Home for awhile

 

The Great Fear

All went quite well. The oxygen was given to me with a tube nearby expelling oxygen at a flow of 1 litre per minute. After 2 or 3 days the problems began. It was difficult for my parents to check the saturation of oxygen with a portable machine found by the neonatologist of the Clinic Sant’Anna, it always rang and what’s more, I started to suffer violent colic. Perhaps it was the food (it happens often) or my intestinal stenosis. After 3 days, oxygen tank into the car, we left for Zurich. The hernia had become very big and when I poop  it hurts badly. Poop has always been a problem, thanks to the NEC.

A trip to remember. Oxygen tank installed amateurishly. Dad and Mom very worried. It’s not as simple as it seems to transport an oxygen dependent baby like me. Dad drove like he was driving on eggs and sincerely, my parents were a little paranoid.

They operated on me under local anesthetic and all went smoothly. Dad asked for an ecography of my heart and they found  a small malformation, normal physiology for a premature baby like me. Anyway, the cardiologist in Zurich wanted to see me again.

After 2 days we returned home and things got worse. My weight was increasing excessively and Dad was afraid that I was accumulating liquid in my lungs. The consumption of oxygen increased. After 2 weeks, they asked the neonatologist at the Clinic Sant’Anna to see me. They prepared everything to bring me there. Dad had the oxygen tank under his arm and its furnished waterpac, a water recipient of distilled water to humidify the oxygen I breathe. Dad tilted the tank a little and the water ran directly into my nose. I stopped breathing and became blue. Mamma realized what had happened, took me out of my portable seat and turned me over. I wasn’t breathing. Mommy was great. She used artificial respiration , I coughed and began to breathe again. Dad and Mom were pale with fright. My grandma, Gemma, who was there, scared to death. Terrorized, my parents called the clinic, the doctor reassured them and with incredible caution they brought me to the clinic.

The data was ugly. My PC02, the C02 in my blood was 78 (normal 30-45). What it means is that the lungs don’t exchange the gas well. Dad insisted that my weight increase of 1 kilos in a month was too much. The doctor lightly increased the diuretics, but couldn’t admit me into the hospital. The clinic is not authorized to do so. My parents continued not to sleep during the night, the colic was stronger and the consumption of oxygen was still increasing, now at 2 liters a minute with a tube at 10 cm then replaced by a sub-nasal cannula. My autonomy without oxygen was 10-20 seconds and my respiratory frequency was over 100. The machine was crazy, it rang all the time. Dad and Mom didn’t know how to put in the sensor and the sub-nasal cannula anymore. It was a nightmare!

Dad had a dear friend construct a "bubble" in Plexiglas for me, so he could find out how much oxygen I needed. With the help of the Group against Tuberculosis he found an apparatus to measure it. 60% too much!!

The situation was worsening rapidly.

They called the "croce verde" (similar to the Red Cross in the USA) and asked for an emergency course of resuscitation. They arrived quickly and gave it. A doctor also arrived, surprised to see my family dealing with a baby at home in my poor condition. They were doing everything they could and they started to stay around our house. Great! The Group against Tuberculosis gave us their precious assistance. I wasn’t well, but they began to help my parents. They brought me back to the Doctor at the Clinic Sant’Anna. The PC02 had gone up to 83, a very scary level,  but the Doctor suggested to continue with the oxygen therapy and nothing more. Dad and Mom agreed, they knew that if I continued like this they risked losing me. They called Zurich and the Primary Doctor listened, but before bringing me back to Zurich, to avoid the trip he suggested they call and consult with Doctor Regazzoni at the Hospital Beata Vergine of Mendrisio. He said she is an optimal neonatologist.

Finally Pocahontas

Dad called Mendrisio and spoke with the Doctor. He explained and she understood his discomfort, fear and the need to help my desperate parents. Above all, she understood the I was in poor condition. At 11:00 the same morning, the ambulance brought me to Mendrisio. The Doctor was there waiting for me, she examined me all afternoon and canceled all her appointments. It felt like I had arrived home in Mendrisio. At the end of the day, the Doctor decided the type of therapy: Lasix (a strong diuretic) to add to what I was already taking, corticosteriod orally for 14 days and then continue with inhalation of Pulmicort (a corticosteroid) and Ventolin to open the respiratory airways. She decided to keep the saturation of oxygen at a minimum (88-92%) with a level of control higher than that of normal intensive care and to limit the assumption of liquids. It was music to my parents ears. It seemed to be a good team and Dad and Mom gave them their trust.

 

 

Hospital Beata Vergine (just like home!)

 

The care took effect immediately. I was full of water (edema). The first 24 hours I lost kilo and I was breathing better. Dad and Mom were happy and saw a glimmer of hope.

My stay at Mendrisio lasted for 3 months, with different phases, my care of the first degree. In time, my parents got to know all the staff and they were fantastic. Of course, I got pneumonia, a urinary infection, the electrolytes in my blood were not good, fault of the diuretics, and they had to give me a lot of sodium and potassium that made everything I ate very salty. I had difficulty eating, I had little appetite and I didn’t gain weight. But as the Doctor promised, they were getting closer to freeing me from the oxygen, and I was under constant surveillance. They literally stayed on top of me. At Mendrisio, they don’t wait, they do it.

In the meantime, the Doctor did a cerebral ecography and didn’t see anything. With modesty, she asked that it be repeated in Zurich when I went for my eye check up.

We left for Zurich, with good installation of the oxygen tank and a pediatric nurse in the car. It seemed that the days of unorganized trips were over.

Also in Zurich the cerebral ecography was negative. It was good news even if we couldn’t say all was well with the leukomalacia. But, anyway, it was great news!!

The opthamologist was content. The operated eye was fine. The other had some problem, but it shouldn’t be insurmountable. After 3 days we returned to Mendrisio.

Sunday, October 4, I returned home WITHOUT OXYGEN! The Doctor and the team at the Hospital Beata Vergine of Mendrisio performed miracles. I weigh 6.2 kilos , I haven’t grown for a while but I’m well and I spend my time smiling at my parents.

Dad found, at a high cost, via Internet a drug (Synagis) that diminishes the risk of contracting RSV (respiratory syncitial virus) by 40%, just approved by the FDA. With the help of a pharmacist in Lugano they are able to receive it from the USA in less than a week and i received the first shot the 18th october. It is almost impossible to find even for Americans. 12,000SFR per winter. (the total costs borne by my parents for my medical care in internal Switzerland and Mendrisio, hotels, travel, Synagis, helicopter, etc.. 38,000.-SFR or US$26,000.-)

The RSV is still our feared enemy! Benign for healthy babies but extremely dangerous for us premature babies wth BPD! With isolation at home to avoid colds, flu and the drug ("Synagis") found "on-line", we all hope never to find this terrible virus in our house.

I still have a lot of problems to resolve and overcome, a lot of cures to do, a lot of exams and medicine to take, day after day for a long time. But, I know, with Dad and Mommy, that in Mendrisio there is a team we trust, who are always there to help us. My strength and my will to live, my parents love and first class medical support will be sufficient to help me through the trials of prematurity.

The war is not yet won but the enemy is retreating.

 

Francesco Ugo Locatelli