I had a lovely pregnancy to Leo. Everything was fine until the moment my water broken. It was not clean like it was with my first born. It was greenish. I knew if the water is greenish then its not totally ok. We rushed to the hospital. Leo was born 3 hours after that. He was beautiful 3,650 kg baby boy. What worried me was he didnt cry like other babies. He did cry but very quietly. And when he slept he made such grunting sound like a wounded little cat. I felt that sonething wrong at the moment. Doctor ordered lab tests. All of the tests were normal( they said that i was overworried, i had gestation diabetes in all my pregnancies, thats why During the pregnancy to Leo i had more ultrasounds than normal and all of the ultrasounds were good... Then what can be wrong with him? ) we went home on the second day adtwr delivery after a routine check up. Nothing was alarm. He had done extremely well in the first two months. He gained 1,2kg everymonth and 2 months old he was as big as my first born daughter when she was 4 months. I stopped worrying about his quiet crying or grunting sound when he was born. As a doctor i know that if some thing wrong the baby would not do so well. When he was nearly 3 months his growing slowed down. At the same time he had a flu, i thought" ofcourse a flu can affect on his growing if he doesnt feel well he doesnt drink well"

He just didnt enjoyed drinking any more. Everytime i let him lie down to breastfeed him i heard sounds like he had lot of mucous in his airways. I thought that it would go away after sometimes. And it did go away but it lasted quite long( more than a month) when he was 3 months he saw a doctor.doctor aaid everything was fine. At 4 months again he had routibe check up and they didnt realize anything wrong. I did feel that its something wrong because he didnt enjoy drinking anymore and from making 11-11 nappies wet a day now just 4-5 nappies a day. I did know that something was not ok but i didnot think about congenital heart defect because i did have more ukrrasounds than average and drs always said that his heart was normal. Thats why even when i saw his left chest was abut prominent than the right one i excluded heart disease immedately and thought like" his heart was normal on all of ultrasounds, it means he doesnot have congebital heart problems, if its acquired heart problems it takes time for a heart to get big abd it would show more symptoms first" how stupid and naive i was. I was so stupid as a mom abd was so stupid as a doctor. I should have known that i didnt have a good prenatal teans of doctors i should have known that not all of uktrasound are reliable. And i should have learnt that there are defects which can not be caught by ultrasound( if drs dont actively look for it)

Thats was when he was 4 months abd ahalf that i noticed the left side of his chest was abit bigger than tge right side. I excluded the ability of heart disease and try to explain that maybe its from how he lied when he drank. I had more milk at my left breast than the other one abd all of my babies they preferes to lie on their right side to feed. Now thinking back i know how stupid i was. I was just simply stupid. I had been worried about his growing and now there was more signs but i didnot connect the dots. How stupid i was! I should have just taken him to a dr and shouls have told them to check his chest. Instead of that after i excluded heart disease i tried to change hus position duringthe night so that he was on his right side as frequently as his left side. About his growing, one doctor believed that he needed so start to eat solid to gain weight well again. Other doctor believed that maybe my breastmilk was not nutritional enough fir his normal growing anymore. I had been on diet all the time because of my diabetes, so i decided that i ate just normally so that mg milk would ne nutritional for him( now thinking back it was just plain wrong way of thinking, i had been on diet all the time if he could gain 1.2 kg per month in his two first months then my milk was just perfect for him, how wrong to think that it was my milk that didnt give him enough nutritions) anyway we were into that direction. We started to hive hom solid he ate really well and drank less and less. 4th months he gained 200 gr.5th month 200 gram. When he was nearly 6 months i took hom to a private pediatrician who listen to his heart and lungs and then just ordered some lab tests( clearly she didnt notice the chest and stuid me did not tell her either, because that day in my mind i had excluded the ability of him having a heart disease then i just forgot about the chest and just focused in his growing). The lab results showed like he had a iron defeciency (very subltly) i bought iron syrup to give him everyday. We were supposed to go back to that private dr once we got the lab results but i decided we would not go. At that point i thought i had known the reason why he was not growing well. I thoight there was some reason taht made his gut not to absorb iron so well thats why his skin look abit pale and he was not eating well. So we didnt see that pediatricain again. But at the same time we were arranged to see a pediatrician at health care center( thats one of the reason why i did not want him to see the private ped the second time too) who just listened to us and checked his length and weight and did not do anything else and told us to call her after a month to see how he would do with solid.

In the middle of January we had a one week trip to Paris. Everytimg was fine. Leo ate solid very well and was in my breast some times a day bit didnt drink much. But he ate solid really well.after the trip we got home ( Tampere Finland) some days later my husband got sick. There was RS virus epidemia at that time. I m sure he had it. Then it went through the family. My daughter Annika ( then nearly 3 years old) had it after my husband it lasted quite long on her. And then i had it too. It was quite tough even for adults. It last 10 days for my husand and over a week for both Annika and me. My baby boy Leo was the one who got it. Once he had symptoms i knew that he had bronchiolistis from RS virus and we took him to a private ped( this is faster way to get a referral to be admitted into hospital here, otherwise you go to emmergency room and wait) as i thought he was diagnosed bronchiolistis( as clear as day) he was sent to Tampere university hospital. Here he was given ventoline through an inhaler twice and we were told yo go homr and take him back if he got worse. 36 hours later he got worse i took him back to hospital he was admitted to the ward of infectious diseases where h had been 2 weeks. Those two weeks is the most painful memories i have with Leo. He could not settle in his bed. He could not lie flat. He had to be in sitting position or we had to carry him in our lap. He could not sleep in 2 weeks. He was extremely tired but he was struggling with his breathing. I saw that its not only bronchiolitis. I told his dr every morning when she came to check him that i believed that there must have been something underlying apart from bronchiolitis because bronchiolitis should never make a child feel so bad and so weak. I dont undestand even now why i didnt ask for a chest xray. Many test were done which were far more complicated than xray like test to find virus in his mucus samples. They saw that he had contracted 2 kinds of virus. RS virus and metapneumonia. I didnt believe that he just had brinchiolitis but i dont undestand even now why i didnt exam him myself and didnt ask for an xray. Every morning drs came and said maybe tomorrow he could get home. That tomorrow did not come. At the beginning of the second week since he came to the ward he got worse( that was the time they found the second virus from his sample. They thought his long lastjng symptoms were explained by that second virus. I was not satisfied but still didnt not exam him at all. I dont have any explanation for that. I m a doctor and i didnt exam my baby at all when he was sick. I cant understand why. My husband said that maybe because i was too tired. Yes i was very tired, i was 6-7 weeks pregnant to my daughter Sonja and had morning sickness and was in hosital during the nights in the first weeks with Leo. Every morning when my husband came to change shift i drove home and was with my 3 years ild daughter. I felt like i was zombie in that weeks. Yes i was extremely tired but thats not an excuse for doctor Mom not to check her own sick son. I remember they told us that the netapneumo virus could make children feel sick many weeks. He just got more tired everyday. He could not sleep. In the 14th night there at the ward one nurse insisted that Leo needed an xray. Then our life changed that night already ( and i thought that was the worst night) xray showed Leo had an extremely enlarged heart( 3 times of what it should be) he was rushed to urgent ultrasound.what happened next was i found my self stroking his head and singing twinkle twinkle little star for my poor little to stay calm and in place for the cardiologist to do ultrasound. What i saw on the screen was a shivering heart literally. Leo s heart was not pumping it was just slghtly shaking. Dr coukd not even measure EF( ejection fraction, which shows how a heart function) then Leo was rushed to ICU room of that ward. We were both allowed to stay there overnight( they just let both parents stay ivernight if thr chikd is critically ill and might die suddenly) we were told to wait for Helsinki hospital to arrange an isolated iCU room for Leo because he still had RS virus. That was Saturday night that Xray was done on Saturday it was like hell as we had to wait and did not rven know when he would be transferred to Helsinki. In Vietnam i would have tried my best to make it happen more quickly. Here i was just a helpless mom. But saturday night after he was moved to ICU room and given heart med and NCPAP he could sleep the whole night. ( thats was strange that my boy was struggling with his breathing but they didnt do anything to help him, they said Spo2 was good thats why ghey didnot do abythung to support him) The first time after 2 weeks that he could sleep in bed. Sunday was Annika s third birthday but we had no mind for it. We kept asking when he could br transferred to Helsinki. At 4 Helsinki called and told we could go there. I was arranged to be with Leo in the ambulance and Henrik had to drive there seperately because there was no place for both parrents in the ambulance. Leo was sleeping the whole way frim Tamperr to Helsinki( i guess he was so tired after teo weeks without sleeping) i fell asleep too. When i woke up the docor said that once Leo opened his eyes to check if i was there and immediately fell asleep again once he saw me by his side. (The sound of ambulances will haunt me to death. I cry evrytime i see or hear ambulances) we arrived at Helsinki at 6pm. Leos condition was very criticall bit stable. It was confirmed by ultrasound there again that Keo had ALCAPA an extremely rare congenital heart defect which doesnot show any symptoms in first months of life but the affected children will have symptoms of heart failure at around 3-4 months when children start to turn or move more.Experts there hoped that after some days once the bronchiolitis calmed down they would correct his defect. Just after 3 days with right treatment our boy who was on CPAP and was surrounded all kinds of wire and tubes started to sit up thats the time they decided to operate him. The surgery went well and even though it was heartbreaking seeing our little one going through all of that we were grateful that he got operated. It was extremely tough watching him suffering from pain and then from wheaning morphine. But once he was moved out of the NICU he was our Leo again. He was full of life. He ate like a champ he moved hands and legs and started to sit up immediately once the pain had subsided( later i joined a group of patebts whose children have the same birth defect like Leo, many of them told me that when their children had the same EF values like Leo s they barely moved their head, let leave alone sitting up and eating without feeding tube) Once he was out of NICU he never needed feeding tube. I was so happy i knew that he was still in critical condition but much better than before surgery. All of the doctors there told me that since early 1980s there have been 42 cases of ALCAPA and they didnt loose any of them. They were all saved by surgery. If they had the strength to go through surgery they would all do well later. He had heart echo every week by the same doctor to see how the heart functions improved. 6 weeks after surgery (since EF of 8% right after surgery) Leo s EF reached 19% thats time when they decided to transfer him back to the University hospital of Tampere. I was worried. I didnt want him to be back to that place the place where they didnt catch his problem and he nearly died. I asked them to let him stay there longer but they had decided the date to move him back. They said:" now his condition is quite safe to be back there, he will need to stay there maybe 1-2 months more until they can shift from IV med to oral med then ge can get home" we were back to Tampere on 7th April 2014 my boy was nearly 10 months old.

He had been the happiest patient they have known( they told me) he smiled with everyone enterd his room. Everyone including lab nurses who came to get blood samples everyday. When they insert the needle he cried for some seconds but very soon after thst he smiled with them and waved his hands when they left the room. He was adored by those nurses and cleaner. He smiled with his ocasional roomates and their parents. Those Finns called him " aurinkoinen" means" sunny". Yes he is my son and my son. Every morning i drove there with a heavy heart thinking when i coulx get him home but once i reached his room i felt happy. The room was small. If he was alone he had some space to move around( he was also limited in his moving with call of ECG cables and catheters) if he had roomate then no space for him to move. It was so painful to see a child at that age being " imprisoned" in his patient bed. But it was so happy to be with him. I was with him since 12 to about 10 pm everyday. I fed him i took him to his nap 2 times and took him to sleep everynight. We had real fun with each other... They were successful to wean all IV med. Hd started to take only tablets and was doing fine. But one strange thing was his heart function( EF value) did not improve at all since he came back to Tanpere.6 or 7 echos had been done and EF just stayed the same at 19-20%. I was worried snd asked them to move him back to Helsinki. I had the feeling that he would not improve anymore. In the darkest moments i had the fear that he had more than just ALCAPA. During that time i was talking with parents of ALCAPA kids many of them told me to be patients sometimes it even took years for the heart to start to improve its function. They even told me that in their doctor s opinion 6 weeks after surgery was nothing they would wait a year to say if the heart recovers or not. Leos heart did recover well after surgery until that point ( where EF was 19%) all of thf ultrasound after thst just showed the same values. I asked them to move him back to Helsinki. I persuaded Henrik to ask them too( they dint do it if just one parent asks for it, unless you ate single parent) Henrik didnt want him to be bsck to Hel. He said he s soon getting home. And yes he did get home despite all of my worries. Our Leo did get home on 28th May 2014 He had been home for 2 weeks. Enough for his daddly proudly taking him to playground several times. Enough for his mom put him on the tricycle which had been waiting for him long long time. Enough for Annika playing with him in the swimming pool in our backyard just once. On the 11th June( two weeks after he got home) he had to gi back to the ward for Simdax infusion, he was there 24 hours and got home again 2pm 12th June. We had one of the nicest day with Leo snd Annika. They were playing in the garden. He was on his swing happily. They were playing in the pool which we filled with warm water. He ate very well that day. Everyhing went well until 2am the next morning( 12 hours after discharging from hospital) at 2 am i heard him crying i came to his baby bed and saw that he had thrown up big amount. I took him abd cradled him he started to throw uo more and more. His stomach was empty but it didnt stop him ftom throwing up. I guessed he got enterovirus from the ward where he was for med infusion. At 6am Henrik took him back to hospital. This time he was admittef to the ward of infectioys diseases again( where he nearly died some monthd before) i thougth" oh no i dobt want him to die there" i had really bad feeling that Leo woould die there in the hand of thar doctor( the one who was with him 2 weeks and didnt catch his defect) at the same time Annika and I had similar symptoms ( throwing up) so i stayed home to take care of Annika. Henrik was woth Leo. He went tl thd ward on Thursday, i came to be with him some hours on Friday and some hours on Saturday. On Saturdat he didnot throw up any more. They told that he could get home on Sunday or Monday. Sunday afternoon he learnt to walk. He took his first steps proudly and did it slowly enough for his dad to catch with his phone camera.Sunday afternoon he had high fever. Panadol didnot help. Hid temperature was 39-40 C. Theu gave him panadol every 4 hours and in between they gave ibuprofen. The whole Sunday i could not be with him because Annika and i was sick and they didnt allow us to come to visit him( even though Annika had packed a full bag of toys for him, that picture of Annika preparing to go tk visit him and was disapointed about not to go there will be in my mind forever) i missed him terribly. On Monday morning i called Henrik to ask how he was Henrik said that he had breathed heavily for a short time but that the moment i called he looked normal again. I could not stay at home any more i took Annika yo my in- laws and drove to the hospital. There i saw my boy looked likd he was exhausted from the fever. Before i came they had done Xray and s cardilogist had come to see him. Theg didnt find anything alert. I wiped him with warm wet tissues and asked them to give him Ibuprofen( he just got panadol 1 hour before) ths temperature went down to 38.3. His cardiologist came and said that even though he had high fever all of the lab( Including C reactive proteine looked normal. My husband and I asked her to prescribe antibiotic. We were so afraid that he had some bacterial infection which was not caught by the lab tests. The doctor agreed and prescribed IV Cefuroxime( Leo had have ir several times before) at 11 am Monday 16 June 2014 Leo just fell asleep in my lap i was cradling him he was just sleeping so nicely in my lap. One nurse came to give homthe antibiotic into his IV line( he had IV line at his foot) leo started to cry, i calmed him down so that the nurse could give the med. Whe she gave just half of thd syringe Leo sarted to breath shallow and fast. I knew that something wrong i told her to call the dr. Sr came and didnt do anything. I told her to give adrenaline and put the tube. She said they didnt have any tube there i said ar keat she had to give adrenaline. She told the nurse" adrenaline" yhs nurse asked her" how much?" She said:" strong dose". It felt like enternity until the crash team came. Ofcourse it was too late. Leo left us and his physical body behind....