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Name: Hernán y Verónica
Our child’s name: Uma
The date our child was born: 08/01/2013
The date we lost our child: 17/01/2013
The hospital where our child was treated: Hospital Italiano
The physicians who treated our child: Dr. Makarovsky, neonatologia, UCIP
Our story: (Rough translation by ACD webmaster):Uma was born on Jan 8, 2013 weighing 6 lb 12 oz after a normal pregnancy of 39 weeks gestation. Immediately I cried because when they started cleaning her because they had to put her on oxygen. In a while the oxygen was removed and we went to see her. At 4 o’clock she was cynanotic (purple) and was taken to pediatric intensive care. At first they diagnosed a congenital heart problem based on an echocardiogram and a chest x-ray. They began administering vasodilators and continuous oxygen because if they were removed she would become cyanotic. An angiogram was done at midnight which ruled out heart disease and the new diagnosis was PPH (persistent pulmonary hypertension). After that test, they used a conventional respirator and nitrous oxide nitric and eventually a high frequency respirator. She did not respond to the treatment and they reported to us they could not do anything because there were complications with other organs (kidneys). After some time, the lead Pediatric Cardiologist reported that Uma had patent ductus areteriosus and that she would need an operation to close it to treat the PPH. They put her on ECMO to let her lungs rest and they managed to reduce the pressure. During the operation they took a sample of the lung to perform a biopsy. She was very swollen after 6 days on ECMO when the result of the biopsy indicated she had Alveolar Capillary Dysplasia. We were told that it was fatal and that ECMO should be disconnected. We were left alone with her on a respirator and treatment for pain. Twelve hours later Uma passed away. We want to know the cause of this terrible disease and we are going to participate in the genetic studies to determine if we are carriers. We want to collaborate in finding the cure because this is so painful. Uma we love you. ..Papi, Mommy and Euge. ***********************************************************************(Orignal Entry): Uma nació el 08/01/2013 con 3.070 kg después de un embarazo normal de 39 semanas de gestación. Enseguida lloro pero cuando se la llevan a limpiar le tienen q poner oxigeno. En un ratito se lo quitaron y nos fuimos a la habitación. A las 4 hs se puso cianotica (morada) y se la llevaron a terapia intensiva pediátrica. El primer diagnostico fue cardiopatia congénita por coartación de aorta (después de haber realizado un ecocardiograma y una radiografía de tórax. Empezaron con tratamiento con vasodilatadores y con oxigeno constante porque si se lo quitaban se ponía de nuevo cianotica. Con una angiografia a las 24 hs se descarto la cardiopatía y se diagnostico HPP (hipertension pulmonar persistente). Luego del estudio la pusieron con respirador convencional, luego con oxido nítrico y por ultimo con respirador de alta frecuencia. No respondía al tratamiento y nos informan de neo que ya no podían hacer nada mas por ella porque se empezaron a complicar otros órganos (riñones). Después de unas horas el jefe de cardiocirugía pediátrica nos informa que Uma tiene el ductus permeable demasiado grande y que hay que operar para cerrarlo porque eso no ayuda a que baje la HPP y ademas para conectarla a ECMO de forma tal que sus pulmones descansen y consigan bajar la presión. Durante la operación le toman una muestra del pulmón para realizar una biopsia. La gordita estuvo 6 días en ECMO hasta que el resultado de la biopsia fue displasia alveolar capilar pulmonar. Allí nos informaron que era mortal, que había que desconectarla de ECMO y solo le dejarían colocado el respirador y suministrándole tratamientos paliativos para el dolor. A las 12 hs de desconectarla Uma falleció. Queremos y deseamos saber la causa de esta maldita enfermedad y para eso vamos a realizarnos los estudios genéticos que sean necesarios para ver si hay algo en nosotros. Esperemos colaborar en encontrarle la cura porque es demasiado el dolor. Uma te amamos…papi, mami y Euge.

Added: February 14, 2013

Name: Martin & Tereza
Our child’s name: Stella Maria
The date our child was born: 17 July 2012
The date we lost our child: 03 August 2012
The hospital where our child was treated: CHOP
The physicians who treated our child: team at NICU east
Our story: Our daughter started to change color 13 hours after she was born while we were still in the hospital. She was taken from our room to NICU unit and put on ventilator. Her condition didn’t stabilize so next day they transferred her to Children’s Hospital of Philadelphia and put her on VV ECMO first. After few days her heart got tired from pumping against high pressure in her lungs so doctors decided to change to VA ECMO and give the heart more time to rest. Couple of days later with all possible support (ECMO, nitric oxide) her conditions didn’t improve. Echo of the heart confirmed high pressure in her lungs. So doctors have suspected ACD as a cause to all of her problems. We were asked if we want them to perform biopsy of her lung. We decided not to do biopsy. Instead after consulting with doctors we decided to take her off ECMO. We were able to hold her and be with her for the last 4 hours. Our angel departed from us peacefully at the same time she was born. One month later autopsy results confirmed ACD. We are very thankful for these 17 days she was with us. We are very grateful to everyone who cared for Stella Maria.

Added: October 15, 2012

Name: Antony Dorling & kinty jurkane
Our child’s name: Charlotte Marie
The date our child was born: 07-03-2012
The date we lost our child: 11-03-2012
The hospital where our child was treated: Addenbrookes rosie (UK)
The physicians who treated our child: Rosie Campaign
Our story: Our beautiful little girl was born the 7th march 2012 and started snorting, she didn’t even cry after being born immeadiatly we knew something was wrong at 1am the doctors took charlotte and incubated her the next day my partner and charlotte got transferred to addenbrookes hospital from west Suffolk hospital where she stayed incubated for the 4 days she was alive. the 11-03-2012 she suddenly got worse and passed away. The doctors informed us her heart had stopped and they were trying to bring her back but they couldnt. 3 months after (which is today) we found out it was ACD that had caused her to pass away it was a doctor from GOSH that had found this, the nurses at addenbrookes couldn’t understand what happened but now we have been told our next child has high risk of having ACD and could be living on an incubator for most of its life.

Added: June 15, 2012

Name: Francesca Di Benedetto
Our child’s name: Edoardo
The date our child was born: 15/04/2012
The date we lost our child: 15/04/2012
The hospital where our child was treated: San Daniele del Friuli
The physicians who treated our child: Dott. Del Frate
Our story: a few minutes after Edoardo was born, he started having troubles breathing. he was intubated and given oxigen with nothing happening. he died 90 minutes after being born. Edoardo was diagnosed with ACD postmortem.To this day i don’t thing any of the doctors that tried to save him knew what they were fighting against.

Added: May 24, 2012

Name: Ellen & Alex Saksen
Our child’s name: Callaghan (Cal)
The date our child was born: 5/18/10
The date we lost our child: 5/28/10
The hospital where our child was treated: Boston Children’s
The physicians who treated our child: Drs Laussen and Pigula, among many others
Our story: Cal was diagnosed with Hypoplastic Left Heart in utero at 20 weeks. We made the decision then to deliver him in Boston so that he could undergo surgery with the best and most experienced team in the Northeast, as we live in Maine. Delivery was fine and the whisked him to NICU right away. THings seemed fine for the first day or two as we waited to book his first surgery. But his oxygen never stabilized and the docs kept putting the surgery off. Finally they decided to go for it, and in one surgery repaired his heart. We thought it was a miracle, and really it was. But again, in recovery for three days they could not get his systems to stabilize. We did the nitric, the steroids, and eventually ECMO. That’s when we knew, deep down, we were in real trouble. ACD came up as a diagnosis but because it’s so rare, the docs didn’t think it could be that. Two more excruciating days on ECMO and the lung biopsy came back; ACD. We took Cal off the ventilator 10 days into his life and held him close for his last breaths. The nurses and docs at BCH were positively amazing, but we still question how crazy and awful the whole experience was. Cal would be two this month and it’s only now that I am able to write about it, however briefly. We did make the decision to try to conceive again and I delivered a healthy boy about 4 months ago. Our healthy son helps to dull the pain of Cal’s loss but it also highlights all the wonderful and amazing things we missed with Cal. I hope we can figure out how to prevent ACD or at least diagnose it in utero. Deepest sympathies to all who have posted here.

Added: May 4, 2012

Name: Victoria Harris
Our child’s name: Hadassah Adiella Harris
The date our child was born: Febuary 8, 2012
The date we lost our child: Febuary 28, 2012
The hospital where our child was treated: Thomas Jefferson University Hospital
The physicians who treated our child: Dr. Adini
Our story: Hadassah was born and immeadiately began to struggle to breath. Doctors performed cpr and brought her back. They initially thought she had aspirated merconium and had difficulty breathing. She was rushed to the intensive care nursery and her fight began. Doctors made the ultimate decision to place her on the heart & lung bypass know as ECMO. She showed some signs of recovery and was taken off of ECMO. Within days she began to struggle again and began to show signs of an infection. Doctors wanted to do a lung biopsy but it was too late. Hadassah lost her battle to live only 20 days of being in our lives. We learned from her autopsy that she had ACD. We hope that by joining the search for a cure no one will have to go through this.

Added: April 19, 2012

Name: Jo Taylor and Chris Coe
Our child’s name: Alexander Taylor Coe
The date our child was born: 8th May 2011
The date we lost our child: 17th May 2011
The hospital where our child was treated: Great Ormond Street, London, UK
The physicians who treated our child: Dr Ellen Rawlinson and many many more
Our story: Alexander Taylor Coe was born on Sunday 8th May 2011 at 21.33 on his due date at Princess Royal Hospital in Haywards Heath, West Sussex, England. I’d had quite a few bleeds during my pregnancy but no-one seemed worried by this and it was put down to one of those things. No abnormalities showed up on the 2 scans we had and although I had monitoring at 36 weeks for lack of movement, all was OK and I went on to be full term. After a 22 hour labour, I had an emergency c-section and my partner Chris came and showed me our son Alexander for the first time. All was fantastic for the first hour and Chris was proudly walking around the room cuddling Alex and showing him off. Just after we got into the Recovery Room, I took a picture of Chris and Alex and noticed that Alex looked very grey. As I was just about to say this, the Midwife looked up, gasped and ran out the room with Alex and started to resuscitate him outside our room. As I still had no movement in my legs from the c-section, I could not move but Chris was trying to see what was happening to Alex. They managed to get his colour back quite quickly and he was taken to the Special Baby Unit at the end of the corridor for oxygen and monitoring. Throughout the rest of the night, we were told Alex was being monitored and a Consultant from Brighton had come up to look at him. It was decided that Alex had to go to the Neo-Natal unit in Brighton and so he was taken in a Nitric Oxide Incubator and we followed on hours later. On arrival at Brighton, it became quite clear how sick Alex was. At this point, we were in complete ignorance as no one had seemed worried – something now I am very grateful for as we could not have got to Alex any quicker. Dr Cathy Garland came to see us on arrival and sat on the floor in tears saying she had done all she could and the team from Great Ormond Street were on their way and that Alex needed to go on ECMO immediately otherwise he would die. Our Rollercoaster ride had begun. Alex and Chris went in the CATS ambulance on a high speed dash from England’s South Coast to central London and I followed in another ambulance to be taken to a nearby London Hospital where I had been admitted to due to my c-section. I managed to get myself discharged almost immediately (on a promise to come back the next day for my medicine) and went to Great Ormond Street (GOSH) to be with Chris and Alex. Alex was put on ECMO immediately and we were found a room for a few hours rest in the CICU ward as they felt sorry for us and no proper bedrooms were available at 1am! The next morning, the battle began and we were very optimistic for Alex’s survival after having read leaflets on ECMO’s success and we were determined that Alex would be one of those statistics too. GOSH have flats and bedrooms for the families of every child in their 3 Intensive Care Units – something that we had never even considered before we found ourselves on this rollercoaster so we were able to stay up in London with Alex to be there with him every minute we could. After 3 days on ECMO, we got to see Alex awake for the first time since he was born. His night nurses had made his hair all spiky and had decorated his headband holding his cannulas in with stickers so Alex looked like a little Rock Star – a name we have come to call him! It was so lovely to see our little fighter so awake and holding our fingers so tightly. After 5 days on ECMO, there was concern with his chest drain bleeding and so it was decided he should be taken off to see how he would be. At this stage, like most other cases on here, it was suspected that Alex had PPHN and that ECMO hopefully had rested his lungs enough for recovery. He came off fairly easily and was then put on the oscillating ventilator and seemed to be OK on that for 2 days. Alex’s oxygen stats then started dropping again and after a stressful night and 2 ventilators later, he stabilised again. Alex really didn’t like Mondays! On the 9th day of his life, it was suggested by Aparna, one of the Consultants on that day, that Alex should have a lung biopsy. The Doctor’s told us that they just wanted to rule out a very rare lung condition but were pretty sure it wasn’t that! Alex got through that operation with no concerns and we were allowed to go back and see him as soon as the operation was finished. Sadly that evening, the results came back and it was confirmed that Alex did have ACD and there was no more that could be done for him. Luckily family were on their way up to visit and so we all got to say goodbye for the last time. Despite such a brave and courageous fight for life, Alexander’s fate had been sealed at conception. We are so grateful that we got to spend 9 precious days with our little Rock Star but just wish it could have been a lifetime more. Our friends and family have done us proud and we have so far raised over £3000 for Great Ormond Street Hospital and hope to raise more in future for GOSH and the ACD Association. This can then hopefully be used to help try and find further information on ACD; develop pre-natal testing; and one day to be able to eradicate ACD completely. Chris and I are currently about to have Genetic testing in the UK to see if we have the FOXF1 mutation.

Added: July 12, 2011

Name: Diane D’ALLesandro
Our child’s name: Dominic Jacob D\’ALLesandro
The date our child was born: March 31, 2011
The date we lost our child: April 21, 2011
The hospital where our child was treated: Bay Medical, Sacred Heart, and Shands
The physicians who treated our child: Dr. Fontin,Dr. Tim and Dr. Kay
Our story: At five month we were told that our son would not be healthy. There was something wrong with his heart, fluid in both lungs, as well as in one of his urine tubes, I as well was holding extra fluid around him. I was seeing the dr every two weeks till I was enduced 3 weeks early. He was fine the 1st few hrs then put on oxygen. He seemed to go up and down on his oxygen levels. After 4 days they said he had to go to a bigger hospital. A hospital in which he only spent the night. That morning the Dr Tim told us that had to fly him to a hospital with ECMO, drs there would check him to see if he would have to be put on or not. By the time we got there he was already on the ECMO. Our son nearly made it there. Our son seemed to be getting better. There came a point when ECMO was doing nothing for him any more. He would get worse anytime they would try to take him off. On April 20 we were told that they had found he was missing corm. 16 as well as many others only being half. Something they already believed it would be. On April 21 our son was taken off everything. We ( my husband, my 2 yr old, Dominic, as well as myself) give blood and let them have a piece of his lung. We hope that by this they can find a piece of the puzzle. Dominic had our family, churches, friends, and many strangers some we have meet and some we may never know. All praying for him. Although he passed, to us he is still our little mericle. It’s amazing how one little baby who only lived 21 days brought so many together.

Added: May 15, 2011

Name: Laura Perez
Our child’s name: Dominic DAllesandro
The date our child was born: 3/31/11
The date we lost our child: 4/21/11
The hospital where our child was treated: St Jude, Flolrida
The physicians who treated our child: not sure
Our story: Dominic was my nephew/God son. My sister learned something was wrong when she had her ultra sound at 5months as time went on they felt they needed to treat him soon not nowing what was wrong he was born at 8months. he was born in Florida and tranfered to a hospital with an ECMO machine. Doctors ran test and after 2 1/2 weeks told my sister and brother in-law he had ACD. All the prayers and hopes for a mirical could not save him. His parent had to face the worst desition. He has left a huge hole in our hearts. I’m very sorry about you daughter. It is very sad that no one ever knew about this untill it happen to us. What you are doing is amazing.

Added: May 12, 2011

Name: Brookelynn Niles
Our child’s name: Tristan Russell Zozaya
The date our child was born: January 3rd 2011
The date we lost our child: January 18th 2011
The hospital where our child was treated: Banner Thunderbird and Phoenix Childrens Hospital
The physicians who treated our child: Dr. Guiterrez, Dr. Carballo
Our story: At my gender ultrasound at 18weeks pregnant I found out I was having a boy. At my following routine Drs. appointment my Dr. had told me that they were concerned after viewing the ultrasound that my sons kidneys were enlarged and they were going to refer me again for another ultrasound. The next ultrasound done 1 month later showed that my sons kidneys were enlarged and that it was nothing to be too concered about but should be watched and I was scheduled for routine ultrasounds and NST(non stress tests) every 4weeks. Now that my son was bigger, at the next ultrasound the Dr. was able to notice abnormality with his intestines and would need surgery to correct after birth. Around 31wks. I went into triage complaining that I felt really anxious and shakey. As a routine, they hooked me up to the fetal monitors and they showed I was contracting regularly. They gave me the shot and performed a test to see if I would deliver in the next 2wks and checked if I was leaking any amniotic fluid both tests were negative and after the shot the contractions stopped and I was sent home. Few days later at the next Drs. appt. I complained the contractions were coming all the time and the Dr. said that she could put me on a medication but the medication has worse side effects then just dealing with the contractions so I denied. I was back in the hospital a few days later with frequent contractions, 1 shot to stop contractions and 1 shot for steriods(incase baby decided to come early) and I was sent home. December 31st, I was back in triage where they gave me another shot to stop contractions and ran the test to see I was leaking fluid, test came back positive and I was admitted and given the second set of steriod shots and would be induced later on. Contractions stopped and they gave me an ultrasound to see if the levels of fluid had dropped or rised. The ultrasound showed the levels had not changed and that I most likely had a “high tear” that was small and probably sealed over and they decided it was in Tristan’s best interest to not induce me, I was later sent home. January 3rd, I was at my routine ultrasound/NST appt. NST showed frequent contractions and they performed the amniotic test which showed I was leaking fluid again and I was readmitted and induced that night. Dr. broke my water and I flooded the whole labor and delivery room. At 10:59pm January 3rd, 2011 Tristan Russell Zozaya was born vaginally weighing 4lbs 9oz and 183/4 inches long. Right when I saw him I started crying that he was so tiny. I heard his little cry for a brief moment before they intubated him and for a second I held him while the nurses hand bagged him, he was the color of snow, so pale. They rushed him to the NICU where they put him on the oxygen ventilator. Later that night I saw him. He looked so much better, he wasn’t so pale anymore he even looked a little jaundice. I was released 2 days later and it was so very hard leaving without him. Overnight they put him on the nitric oxide ventilator. I didn’t realize just how bad things were really becoming until the next day my boyfriend and I were getting ready to go shopping for more baby supplies when we got a call from the hospital saying Tristan was placed on the jet ventilator and his stats were dropping and we needed to come to the hospital to determine the next step. Both families met where the Dr. discussed that there was nothing more they could do at Thunderbird that he needed to be transported to Phoenix Childrens and that’s when he introduced ECMO, that it was Tristan’s last hope. Our daughter Arianna,2yrs. was able to see her brother for the 1st time incase it was the last time. We ofcourse agreed and Tristan was airvaced and placed on ECMO. Seeing him for the first time on that machine made me weak in the knees and my stomach turned just looking at him. Over the next few days Tristan’s stats were great and I sat there as the nurses kept checking his blood gases and were all so proud and that night they took him of ECMO. I was able to sleep that night. They gave him lasixs to lose the extra water weight. He went from 4lbs 9oz to around 6lbs from being on ECMO. They were able to take him off of almost all medicines and I was able to hold him for the 1st time, I never wanted to let him go. He looked so clean of all the wires, He never looked better. Drs. were already discussing on taking him off of the oxygen ventilator and how many weeks they thought it would be before he got to go home. they were all so impressed with how far he came from the time he first arrived. The next hurdle was his bowel surgery which was performed 3days after coming off of ECMO. The 2hr. surgery became 3 and as I was in the waiting room I was anxious. The nurse kept coming out and I was stressing to her asking if they had found more problems she kept reassuring me that everything was ok. After the surgery the Dr. came out and had told me that I had a very interesting little boy, nothing was in the correct spot, his stomach was turned which they fixed, his appendix was removed because he could become very sick and nobody would know why because it was in a weird position and her biggest concern was that he had no gallbladder which then we learned about a rare disease called Biliary Atresia which is a clog in the bile ducts from the gallbladder to the liver. She also said it could also mean nothing at all because people can live without gallbladders, they are removed all the time. It would just be something they would look into after he was healed from the surgery. I visited him every day all day and when I wasn’t I was constantly calling and anytime the phone rang my stomach would drop in fear that it was bad news. A few days after I called to check on him as routine like always and they told me they had to put him back on nitric and had put him on blood pressure medication again. I knew after all the ups and downs that this was only the beginning of another big fall down. I went to the hospital where Dr. Guitterrez told me Tristan was a fighter that he took 3xs the amount of sedation medicine to put him to sleep that he kept fighting all the ivs. Few hrs. later Tristan’s stats dropped in the 50s and was having to be hand bagged as the ventilators were not enough and the Drs. talked about putting Tristan on ECMO for the 2nd time, this time it would be directly to his heart as they cannot reinsert through his neck, I agreed. I knew he didn’t want to give up. The canulas were inserted successfully and right away his stats rised. I then had him baptised. I went into a depression coma and couldnt get out of bed. I started having a high fever and had to go into the hospital and I bawled my eyes out and refused to sit in the middle of the ER with a bunch of rude people coughing pnuemonia everywhere in fear I would get sick and not be able to visit Tristan. I made a Drs. appt and found out I had a common breast infection from pumping called mastitis and was given antibioitics. The following day I got the worst news of my life, the Drs. were telling me that Tristan was really going downhill, that the right side of his heart was failing and he was potentially having organ failure. They asked if it came down to it would I opt for resusicitation and we agreed that that would not be a good idea with his sternum being open due to the ECMO canulas. When I got there he was hooked up to so many ivs. They had him on paralysis and sedation medicine. We spoke to a chaplan who came in and said prayers and I was able to hold him for the last time. Surrounded by family everybody touched him. They clamped the cords of the machine where Tristan took one last look at me and closed his eyes to forever rest in peace. For being here for such a short amount of time Tristan touched the lifes of both families. He was so strong for being so tiny. I held my son in my arms for a short time but I hold him in my heart forever. I love you son, always and forever.

Added: April 11, 2011

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