Read our stories

Name: Shannon Cone
Our child’s name: Kaylin Marie Cone
The date our child was born: 2-07-2000
The date we lost our child: 02-21-2000
The hospital where our child was treated: Children’s Mercy Hospitol
The physicians who treated our child: Dr. Thibeault
Our story: I know this story is going to sound all to fimilar to all of you. I had a little girl Kaylin on Feb 7,2000.I had a perfect pregnancy. I had several ultrasounds and nothing showed up. She seemed perfectly normal except for the portwine stain on her face, back and buttock. They said it was nothing to worry about that is could be fixed with plastic surgery. She was the most beutiful thing I have ever seen and wasn’t worried about it at all. She was very sleepy and to remeber now when she was about six hours old I noticed her color was off so I called the nurs in and she put her under the warmer and her color came back imediately. She wouldn’t wake to fed so I tube fed her and she did well, burped well and then changed her diaper. But when we laid her down to rest at about midnight she started grunting and screaming a high piched cry. I thought something was wrong after about thirty minutes of this. I called the nurse and she said she was probaby just fussy and would take her to the nusery so we could get some sleep. I was extremely worried. The nuse came back about thirty minues latter and told us she was having problems breathing and thought she had a pnemothorax. She was getting a chest exray and a neonatal doctor was on his was as this hospitol was not staffed well because it was so new. When he got there he confimed pneumothorax. He said he would insert a chest tube to drain all of the air, but he couldn’t get all the air off so he had to transfer to another hospitol. so off she went without her mother, I was still recouping from c-section not more than twelve hours before. We will skip the second hospitol to make a long story really long. She is now at Children’s Mercy on ECMO diagnosed with PPHN. O2 sats despertly low and barely surving. We went through so many ups and downs before she did die but she was so strong through it all. We finally decided to take her off of all her support where she died in our arms and a long strugle of 14 days. We love her and miss her so much. Shannon cone Mommie to Jacob Tyler Born FEb 7, 1996 and Kaylin Marie (bFeb 7-2000 dfeb 21,2000)

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Name: Jacky Doubleday
Our child’s name: Adam Doubleday
The date our child was born: 8 September 2000
The date we lost our child: 18 September 2000
The hospital where our child was treated: St Marys Hospital, Manchester UK
The physicians who treated our child: Professor Chiswick, Dr Birchtold
Our story: My pregnancy was going well until at 24/26 weeks polyhydramnious was confirmed. Subsequent numerous scans showed that Adam had suspected duodemnun stenosis. My husbands father had this in infancy so we were not unduly worried. At 33 weeks I was admitted to Royal Oldham Hospital with high blood pressure and suspected pre-eclampsia and at 34weeks and 6 days Adam was delivered by emergency section. He was so beautiful and weighed 4lbs and 3 ounces. Paul and I were so happy to see and hold Adam at last. Adams agpar scores were 9, then 10. Adam was whisked away to the Special Care Baby Unit to be monitored for the stomach problem. I was well enough to visit Adam in SCBU 2 days later, and wasn’t alarmed to see to see Adam with an oxygen mask in his incubator. Adam was transferred to St Marys Hospital for his operation to correct the duodenal stenosis the following day. Adam didn’t have the operation, as he needed more oxygen each day. I transferred to St Marys 4 days later after complications with the section. Paul, my husband, warned me that Adam had ‘collapsed’ the previous day, they had stabilised Adam with a ‘magic gas’ which I presume was NO, and that Adam was now on a ventilator. We were then told that Adam had pulmonary hypertension, and as a last resort he would be transferred to another Hospital in Mewcastle for ECMO treatment, if this condition did not improve. It was at this stage we realised that the stomach problem was secondary to the respiratory problems. 24 hours later, arrangements were made for Adam to transfer quickly to Newcastle for ECMO. The air crew and medical team arrived from Newcastle minutes before our beautiful son died at St Marys, just 10 days old. Professor Chiswick discussed the partial post mortem with us later, and told us the little he knew about ACD, and that Adam also had a rotated bowel with the appendix on the wrong side. We were also told that this cruel condition is genetic, with very little known about it. We also have a very healthy, happy 7 year old boy, called Luke, and we will never forget our other little son, Adam.

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Name: Louise and John Lambert
Our child’s name: Jenna Faith Lambert
The date our child was born: January 19, 2001
The date we lost our child: January 25, 2001
The hospital where our child was treated: Sick kids hospital (Canada)
The physicians who treated our child: Dr.James, Kavenagh,
Our story: Jenna was our second child. We have a son that is three and a half. It was a hard pregnancy due to extreme amounts of aminiotic fluid. My doctor was worried about the fluid, I had an ultrasound 2 days before I gave birth to Jenna everything was “Fine”. We were estatic that we were having a girl. Jenna was a month premature, her heart was dipping in labour which concerned us. After she was born all was what seemed to be well, she was intensive care to improve her levels of oxygen a bit. approximately 40 hours later a helicopter was on its way to bring Jenna to Sick kids hospital. There she was diagnosed with pulminary hypertension. She was put on ventilaters and support.They thought her bowel had been fully twisted and operated to check, it was slightly twisted. She then dropped drastically and was put on ECMO, where she stabalized, until they discovered hemoraging in her brain.We thought then it meant life for her half paaralysed on her left side. They took her off Ecmo and within 24 hours she died in my arms at 6 days old.The autopsy showed that it was ACD. Which surprised the doctors. We will always remember our beautiful baby and know she is safe in heaven.

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Name: Tanya and Brad Mcnair
Our child’s name: Tyron
The date our child was born: 27 May 1999
The date we lost our child: 06 June 1999
The hospital where our child was treated: National Womens Hospital, Auckland, New Zealand.
The physicians who treated our child: Dr Kuschel
Our story: At 28 weeks, due to polyhydramnios I had an amnio-reduction which all went terribly wrong and resulted in a emergency LSCS at 32 weeks gestation. Tyron was born and his apgar scores were 4 and 7 at 1 and 5 mins respectively. He required intubation and apart from this and his pre-diagnosed heart and stomach abnormalities all appeared fine. When things didn’t improve after a couple of days the doctors discussed ECMO but he was not eligible on the basis of his prematurity, prolonged ventilation and it was thought he had ACD. At ten days old he died in our arms and this condition was confirmed by autopsy. We were devastated. We then discovered I was pregnant 3 months later. After a very anxious but normal pregnancy Tamara arrived, normal, healthy and loved! Not a day goes by that we don’t think of Tyron, he will always be with us in our hearts.

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Name: Allen & Starlynn Markiewicz
Our child’s name: Allen & Shannon Markiewicz
The date our child was born: Allen 9/5/97- Shannon 3/24/1999
The date we lost our child: Allen 10/01/1997- Shannon 4/20/2000
The hospital where our child was treated: Sacred Heart Hospital-CHKD
The physicians who treated our child: Dr. Branchard-Dr. Nagawa
Our story: We unfortunately lost two infants to this disease. Or some form of it. There is no definite answer due to the lack of knowledge of the disease. My first child was born healthy and appeared to be doing well until a day or two before his death. My second child Shannon as well was born healthy and was fine till a day or two prior. The symptoms were the same. The crying and grunting to breath. The color of there skin and the dilations of their eyes. With our first child it was hard to get anyone to listen to us when my husband and I were trying to get him help. They just said he died of Sepsis. They didn’t look into it anymore than that. They also lead us to believe it wouldn’t happen again so we tried to have another child. It was the ignorance of the military medical community. With my daughter, she had very good doctors at Children’s Hospital of King’s Daughters in Norfolk, VA. They worked very deligently to find the cause and to help us not blame ourselves. We had little family support and needed peace of mind. They did a lung biopsy on my daughter while she was on life support. They compared her lungs tissue with our sons and felt they died of the same disease. They also used Nitric Oxide an experimental medication on my daughter. It seemed to be working, but by then her heart was too damaged. Now both our angels are in heaven. We miss them and think of them often still. The pain never goes away, but has eased with time. We have been told that if we try to have another there is a good chance it could happen again. There is also a chance it wouldn’t. After having two infants die one right after another we believe the chances are too high. We wish and pray one day to have a child we can love and raise. We also pray for those who have been through the same and hope they find peace. If you have any information on having other children after one has passed away or have done sperm or egg donation we would be pleased if you would share your information with us. God Bless.

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Name: Phil Tenney and Annie Kendall
Our child’s name: Alexandra
The date our child was born: 7 August 1998
The date we lost our child: 8 August 1998
The hospital where our child was treated: Stepping Hill, Manchester UK
The physicians who treated our child: Lacy
Our story: Alex was our first child. She was born following an uneventful pregnancy by normal delivery. Her birth weight was 6lb 8oz. Initially all appeared ok, she breast-fed well but was quite quiet. When she was five hours old her colour seemed to drain away, we summoned help and she was rushed to the neonatal unit where she was ventilated. The doctors could find no reason for her sudden collapse. Talk was made of transferring her to a specialist centre but this never took place. Alex died the following day, she was only 28 precious hours old. ACD was diagnosed at post mortum, we were also told that Alex had a small, though structurally perfect, heart that may not have been strong enough to sustain her if the lung problem had not been the major cause of her death. We have since gone on to have another daughter, Rebecca, who was born in Sheffield where we have found the obstetric and neonatal doctors to be superb both in terms of support and knowledge. We have gained what knowledge we can through the web site and contacts made from it and would be pleased to share our experience with any newly (or not)diagnosed families, particularly in the UK.

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Name: Jeff and Madonna Myers
Our child’s name: Shelby Lynn
The date our child was born: May 31, 1996
The date we lost our child: July 3, 1996
The hospital where our child was treated: Christ Medical Center in Oak lawn, Illinois
The physicians who treated our child:
Our story: Shelby was our first of three daughters and our second child. It was a challenging pregnancy, and she was born five weeks preterm. She was panting immediately after birth, so she was taken to the nursery for observation. It was a few hours later that we were first told that her life was in serious jeopardy. At 12 hours of age, she was transported to the medical center where she was evaluated and placed on jet ventilation and then ECMO. She had no known abnormalities and the physicians were unable to explain why she was suffering from PPHN. The day she died, she had spent more than a month on ventilators, ECMO, nitric oxide and pharmacological cocktails; we asked to have her removed from ECMO. In the middle of the night in the strange silence that is the special care nursery, we held her as she closed her eyes, took her final breathe, and as her heart beat for the last time, and we continued to hold her until we could say good-bye no longer.It is our hope that one day we will be able to understand why we lost Shelby and explain to our other children why they can not have their sister here today. Today, we are closer that we were when she died. Today we are not alone. We have been brought together with all of the other families who have lost children to ACD and even more, we have been brought together with physicians and scientists who are committed to find out the answers to our greatest question “WHY?”.

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Name: Steve and Donna Hanson
Our child’s name: Eric
The date our child was born: June 7, 1997
The date we lost our child: June 17, 1997
The hospital where our child was treated: Presbyterian Hospital & Children’s Hospital
The physicians who treated our child: Dr. Randy Randel, Dr. John Sommerauer
Our story: Eric was born at 10:48 a.m. and it was one of the happiest moments of our lives. We got to hold him for just a little while, and then he was whisked away to see the pediatrician. Within an hour and a half after he was born, the nurses were giving him a bath and he started turning blue and had difficulty breathing. He was admitted to NICU but respirators and ventilation did not help. So, he was started on Extracorporeal Membrane Oxygenation (ECMO) at 20 hours old. Eric was weaned off of ECMO after 128 hours but required escalating oxygen requirements. At this point, the neonatologists advised us that Eric might have ACD which we had never heard of before. We were told of an experimental treatment of Nitric Oxide at Children’s Medical Center of Dallas, and on the night of June 14, Eric was transferred to Children’s. We were warned that Eric might die in transit, so it was a very scary night. We rode in the ambulance with Eric and our parents met us there. Eric made it to Children’s without problems and was put on Nitric Oxide. Initially, he responded to the treatment but by late in the night on June 16, Eric’s condition worsened despite maximum support. Eric died in our arms early in the morning of June 17. Our parents arrived shortly thereafter to give Eric a lifetime of hugs and kisses. An autopsy confirmed that Eric had died of Alveolar Capillary Dysplasia. He is forever in our hearts.

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