Read our stories

Name: Susan Rudd
Our child’s name: Chrissie May Rudd
The date our child was born: 29.05.89
The date we lost our child: New Years Eve Morning 1993
The hospital where our child was treated: Macclesfield
The physicians who treated our child: I cannot remember
Our story: My Daughter Chrissie died suddenly, we had no diagnosis until after Chrissie died I cannot write too much now as I have only just found this site I will write more again soon I still find it painful after all this time Susan

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Name: Dirk and Nancy Van Doninck
Our child’s name: Nick
The date our child was born: 10 th of mai 2003
The date we lost our child: 19 th of july 2003
The hospital where our child was treated: gasthuisberg at Leuven-Belgium
The physicians who treated our child: Prof. De Vliegher and Prof.Vanhole
Our story:

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Name: Wendell & Marla Boley
Our child’s name: Carson
The date our child was born: April 19, 2003
The date we lost our child: June 2, 2003
The hospital where our child was treated: Egleston Children’s Hospital
The physicians who treated our child: Dr. Piazza
Our story:

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Name: kelley messer
Our child’s name: Austin Jerome Messer
The date our child was born: 12-16-96
The date we lost our child: 01-20-97
The hospital where our child was treated: minneapolis childrens
The physicians who treated our child:
Our story: I believe my child is probably the one mentioned who was the longest survivor on the ECMO and then to the Nitric Oxide. We had a child two years after who at first showed signs of severe respitory distress, and was flowed to Minneapolis as well, but had a miracules turnaround. He is now a very healthy four year old with no health complications.

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Name: Kelly and Steven Boyajian
Our child’s name: Christian
The date our child was born: May 7,2003
The date we lost our child: June 20,2003
The hospital where our child was treated: Oakland Childrens Hospital
The physicians who treated our child: Dr.Joe. Dr Durrand. Dr D’harlingue
Our story: Our beautiful son Christian was born May 7,2003 8lbs 6oz. Within hours he turned for the worse and was rushed to Oakland Childrens Hospital. He was put on ECMO. I was suppose to “stay” in the hospital for 5 days, being I had a c-section, but told my docter to let me go or I would “escape”! Seeing Christian for the first time on ECMO I about died. All the tubes, the cannulas stuck in his neck, the ventilator ect. It was a horrific scene. He did well and within 4 days was taken off, only to deteriorate 1 day later. He was put back on Ecmo which was very risky, and we thought that was the last time we would see him as he was wheeled off to surgery. It went well and the next weeks were filled of many ups and downs. They thought it was Pulmonary Hypertension. Everyday my husband and I would go on shifts spending time with him, praying every minute, calling the hospital every hour we were not there. He had three events that he came close to death,but he always pulled through to everyones amazement. They tried Viagra, it was awful and I could see he was very irratated by this. He was on very high doses of morphine and other sedatives which he fought through alot and was usually awake, moving his arms and legs and very upset. He had his eyes open alot and looked at us as we talked to him. It was so difficult having him so alert because I could see he was not comfortable and I could do nothing. He was taken off Ecmo because actually his vein gave way and the cannula slipped out! he survived! and was put on Prostacycline. Which carried him through the next 2 weeks. After much research done by the docters and ourselves we believed it looked very much like ACD. We had a cardic Cath done instead of a lung biospy[less intrusive]and he deteriorated after that. So my husband and I took him off the machines and held him as he took his last breaths. I had our docters call Dr Bajanni befor we took Christian off the machines because I had read about the research he had been doing on ACD. We agreed to have blood taken from Christian as well as tissue to help with the research. I have since been told that this was the first time they have been able to get a blood sample from an affected child![we also sent our blood along with our 3 year old son] and that this will help a great deal. Losing Christian is so devastating, especially because I felt so helpless with him suffering on all those machines and I could do nothing. In his short life he has given so much love to us, that we will carry with us forever. I thank God each day for my beautiful Son “Bobby” born May 5,2000 perfect and healthy. I too, still look forward to having another child but it will never be the same because we will always be missing Christian. I am here for anyone wanting and needing to talk, please don’t hesitate to e-mail me!

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Name: Joseph and Kelsey Poll
Our child’s name: Landen Joseph Poll
The date our child was born: June 1, 2003
The date we lost our child: June 20, 2003
The hospital where our child was treated: Denver Children’s Hopsital
The physicians who treated our child: John Kinsella and Dan Hall
Our story: Our son was born a little over 40 weeks, (8lbs, 4oz). His breathing wasn’t quite right and he was soon taken to the ICU Nursey at our hospital. The problem was first thought to be a “birth shock” but after numerous efforts to up his O2 levels, they finally transfered him to the Denver Children’s Hopstial eary that next morning. Here his condition was recognized as Pulmonary Hypertension and he was put on ECMO within hours. After a week, the physicians felt his pulmonary artery had improved a little and he was taken off ECMO. He did alright for a few days, but suddenly took a turn for the worse. He was a big, strong baby and seemed to have quite a temper (pulled out his breathing tube and rolled over during one of his fits). They thought he might be inhibiting his own progress and decided to keep him completely sudated with muscle relaxers and narcodics. This didn’t help and test were taken of his fluids to check for infections. When they came back negative the doctor ordered a lung biopsy to “rule out” the possibility of a lung disorder. Late the next day we were given the bad news. Our son had Alveolar Capillary Dysplasia. There was nothing that could be done besides a heart and lung transplant, which couldn’t be done for another 4 months or so and even then, with a small possibility of survival, and the chance he’d make it until then was rare. We then decided to spend the next two days with him, then, with many tears, let him go.

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Name: Harvey Cullen & Katy McDonnell
Our child’s name: Alfie Cullen
The date our child was born: 19/02/02
The date we lost our child: 19/02/02
The hospital where our child was treated: Walsgrave Hospital, England
The physicians who treated our child: Dr T Ahmed
Our story: We had previously lost three other chidren, Harris & Mason were born prematurely in Oct 98. Harris took a bad turn during the night and died next morning, Mason however lived a little longer and died the next day. The PM found that they had pseudomonas infection, and this was attributed as the cause of death. Our daughter Maisie was born Aug 99, after what was a traumatic pregnancy. At 12 weeks we were advised to have an amnio as there was nuchal fluid present, this come back all clear. Then on the 20 week scan it was noted that the heart was enlarged and there was excess fluid around the heart and abdomen. We had a feotal blood sample and resolving parvo virus was noted, after some weeks the fluid dispersed and the heart returned to normal size. Soon after Maisie was born however she took a dramatic turn for the worse and the medical staff were unable to stabalise her, despite using different methods of ventilation. Alfie was born in Feb 02 after a trouble free pregnancy, however immediately he struggled to breath and the medical staff despite ventilation were unable to stabalise him enough to use an ECMO machine. We have now been told it appears are problems are genetic and have found out via the USA (Pro Stocker, Bethesda)that it is ACD. We are now waiting to see if our other babies died of the same cause and not those originally thought.

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Name: Chris and Robin Kirtley
Our child’s name: Christen Alane Kirtley
The date our child was born: March 6, 1997
The date we lost our child: March 15, 1997
The hospital where our child was treated: Medical University of South Carolina
The physicians who treated our child: Dr. Doe Eicher
Our story: After a very uneventful pregnancy, I gave birth to Christen, a beautiful, 7.14 0z., little girl. She was our first child. she scored an 8 on APGAR and everything seemed to be fine until the Pediatrician who examined her found that she had an imperferated anus. We were told that she would have to be transported to MUSC for surgery to fix it and that she would be fine, not to worry. En route to Charleston, she began having difficulty breathing. It progressively got worse and she had to put on a ventilator upon arrival. The next day, when I arrived at the hospital, she was put on ECMO. We knew she was very sick, but even the doctor had hope that she would recover. Dr. Eicher did not know that she had ACD. It wasn’t until she came off of ECMO six days later that we realized she wouldn’t survive this. She still couldn’t breath on her own. She died after having gone through 10 days of struggle, but was given more love than some children receive in a lifetime. We will always love her dearly. I want to add, that on September 18, 2002, God gave us a beautiful little boy,Bret,who was born healthy. We will be eternally grateful for both of our children, one in heaven and one on earth.

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Name: Daniel and Susan Larkins
Our child’s name: Georgina Louise Larkins
The date our child was born: 8th April 2002
The date we lost our child: 18th April 2002
The hospital where our child was treated: Great Ormond Street
The physicians who treated our child:
Our story: At around 7weeks of my pregnancy I had some bleeding and as I had already had 3 previous miscarriages thought number 4 was on the way, however a scan soon proved otherwise as there on the screen was a strong heartbeat. I was scanned again at 9 weeks just as a precaution, which was perfectly fine and had my normal scan at 12 weeks. We did have to go back again though because baby wasn’t playing and they found it difficult to get a good picture. The same thing happened at my 20week scan. She didn’t want to be looked at and kept moving around. We had to go back when she decided she might stay still this time. At 32weks I started getting labour pains. I was admitted to hospital and given steroid injections, just in case she decided to come early. The pains went but I continued to have false pains over the next six weeks on and off. My waters broke on Sunday the 7th April and on Monday 8th April at 14.52 our beautiful precious baby girl Georgina Louise arrived weighing 6lb 14oz and very healthy. We moved quite quickly onto Hazel ward where our family came to visit. Lots of photos were taken with grandparent, sisters and of course Mum and Dad. She fed normally and was even a bit piggy. I fed her at about 11.30 p.m. and this time she was sick but aren’t all babies. Around 3a.m. she started to be restless and didn’t want feeding really. She wasn’t settling after that and I kept taking her out for cuddles, which seemed to settle her for a bit each time. At about 5.30 a.m. I called for a nurse, she seemed to think that Georgina needed feeding but I knew she didn’t and her cry suggested to me that it wasn’t wind either and that something just wasn’t right. The nurse took her to the nursery where she found Georgina to be dusky in colour and she was taken straight to the SCBU. That was to be the last time I would hold my darling little girl until she passed away. Georgina was finding it hard to breathe. The staff at Hinchingbrooke Hospital Huntingdon were brilliant and after a short while dropped her oxygen and for a little while she seemed to be over everything. Then it all went horribly wrong and she need to go on the ventilator. She stayed in SCBU all day going up and down, mostly down. Dr Miles told us that she need to go on to Nitric Oxide and that the Rosie Maternity Hospital in Cambridge was the best place for her. He thought that we could be cautiously optimistic. A team from Cambridge came to get her but it was touch and go when they moved her. Getting her to Cambridge and stabilising her on the ventilator was very hard work for the intensive care unit on Sara ward. By now Georgina was being pumped with antibiotics because the only thing they thought of was that she had some kind of infection. They tried the nitric oxide and she didn’t like that, they tried an oscillating ventilator, she didn’t like that either, in fact Georgina wasn’t going to like lots of things. The Dr in Cambridge, who I can’t even remember his name, suggested that Georgina’s only hope was ECMO, and that a team from Great Ormond Street would be coming to assess her. Things were so bad that they asked if we would like to have her baptised, which we did. All the family were called to say goodbye, but each time she would hang on and her sats would go up again. Apana and Iris from the CICU ECMO team came for Georgina and we signed the consent form for ECMO. Nobody expected Georgina to survive the journey from Cambridge to London, but she did. She was a feisty little thing. By the time Daniel and I arrived ourselves at Great Ormond Street Georgina was already on ECMO. She was fine on ECMO and doing really well. It was nice to see her open her eyes and squeeze our fingers. She had lots of visitors and certainly had the nurses running around. She could be quite temperamental pulling off probes and such. The problem was that they had no idea what was wrong. They had not managed to grow any cultures from her lungs from either Hinchingbrooke, Cambridge or GOSH. Her heart seemed to be fine but an X-ray of her tummy showed that she had been born with her bowel on the wrong side of her body. The surgeons wanted to correct this and so the 5th day of ECMO they weaned her and she came off ECMO. She seemed to respond well, then she went down and need lots of ventilation and they started nitric oxide and prostacyclin just to keep her stable. One minute her BP was up and her sats down and vice versa. At least this time she liked the nitric oxide. They then changed her ventilator to the oscillating one and again this time she seemed to like it. As she wasn’t progressing though it was suggested that she had a biopsy on her lung. This was done on Wednesday 17th April in the afternoon. I think Daniel and I knew then that this was the end. First thing Thursday morning we were told that they had preliminary results back from the lab and we waited to speak to Nick Piggot who was in charge that day. He was really good and explained that results showed that Georgina was suffering from a very rare condition called ACD and that in newborns was always fatal. We waited for a specialist co confirm this before any decision was made and then the ball was in our court. Georgina needed to come off the ventilator. Once again all our family was called to come and say goodbye, this time knowing it would be forever. On Thursday 18th April 2002 our beautiful darling Georgina came off the ventilator and died in my arms. We took care of her and bathed her, took prints of her hands and feet. It was so good to see her beautiful face again and body with no probes or lines in. We dressed her again for the first time since the day she was born. We came home that night with my three perfectly healthy girls, Catherine, Victoria and Rebecca. It’s going to be very hard but we have great family and friends. Reading this page has been a great comfort to us. We thought we were alone but now we know we are not. Everyone in all the hospitals have given us the best that they could and we will be eternally grateful to them. Sue and Daniel Larkins.

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Name: Shelley & Alan Beddoe
Our child’s name: Laura Taylor Beddoe
The date our child was born: 8th January 1999
The date we lost our child: 29th January 1999
The hospital where our child was treated: Glenfield Hospital, Leicester, UK
The physicians who treated our child: Mr Firmin & Dr. David Luyt
Our story: On the evening of 8th January 1999 our dreams came true, when after a great pregnancy only suffering from polyhydramnios and after a very short painless labour I gave birth to a baby girl whom we called Laura Taylor, weighing 6lb 3oz. Laura was not breathing and was resuscitated and we were told that she would go to the Special Care Baby Unit for precautionary measures. Unfortunately Laura’s condition deteriorated and she developed pneumothoraces, which were then drained. She still had poor respiratory function with persistent pulmonary hypertension. It was then decided on Sunday 10th January to transfer Laura to Glenfield Hospital, Leicester for ECMO treatment. Once on the ECMO the Doctors and ECMO staff were pleased with her condition and we all thought that she would only be on the ECMO system for a very short period of time. Unfortunately everytime she was trialed off it was unsuccessful and it was decided to send secretion samples to Cincinatti to see if she was Surfactant B deficient. We waited a week before the results came back and were delighted and running around the Intensive Care Unit with joy when surfactant B deficiency was excluded. Laura’s blood cultures then grew pseudomonas so it was decided to change the ECMO system for a third time, this time even changing the canulars in Laura’s neck, a process that had never been performed before. We had great faith in all the medical staff, especially Mr Firmin Laura’s consultant and when we spoke to him after the circuit change everybody was convinced that we were now on the way up and hopefully Laura would kick the bug and be off the ECMO within a week. The day after the circuit change Laura was great but by midday everything started to turn black, Laura was no longer responding to the ECMO system treatment her blood pressure was dropping drastically low so she had numerous Doctors and Consultants looking at her including those doing heart and brain scans. We were advised that Laura was full of acidosous and were told that there was nothing else that could be done. We called our parents and they came to the hospital, bringing with them out 3 year old little boy Kieran. Laura was then placed in my arms for only the second time exactly 3 weeks after her birth, where she died at 7.30 pm. We all held Laura and gave her a lifetime of hugs and kisses and I know we shall all treasure those memories forever. After a Post Mortem examination it became clear that Laura had died from ACD a condition which the Doctors at Glenfield let alone us had never heard of. We have since gone on to have another son Jack born on 3rd June 2000 with the help and support from many people on this web site along with Doctors from Northampton and Glenfield. We are willing to share our experience with any new families, especially in the UK.

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