We have 51 entries displayed on 6 pages.
<< Newest
|
< Prev
|
1 2 3 4 5 6
|
Next >
|
Oldest >>
| Name: Sally Our child's name: Megan The date our child was born: 1999 The date we lost our child: The hospital where our child was treated: Royal Children's Hospital , Melbourne , Australia The physicians who treated our child: Dr Tibballs Our story: The story of our daughter Megan is chillingly similar to many I have read here. Born following a uncomplicated pregancy, and delivery at term, she "declared" herself unwell at about 6 hours post-delivery and the roller coaster began-transfer to a paediatric ICU, nitric oxide, oscillating ventilation and ECMO(initially with a diagnosis of Pulmonary Hypertension of the Newborn).She, of course, 'survived' on the ECMO for 6 days, and then when this was withdrawn, she died with her family around a few hours later. Her diagnosis was made by lung biopsy after her death. The staff in the ICU had been thinking by the time of her death that this could have been the cause of her illness. But our Paediatrician had never heard of the condition. We had a 3 year old daughter at the time of Megan's death. And we bravely got pregnant again 3 months after and in July 2000 were very relieved to have a healthy son. At the time we were told that ACD may be genetic, but not enough was known about it. So like many, we went into the pregancy just hoping that it would not happen again. Sometimes I would like another child, but I am too frightened to be honest. I would love to see more research done to find the cause. I suppose now I am concerned for my unaffected children and whether they could pass on the condition. I last looked at this website a year or so ago, and would like to congratulate those responsible for its progress and especially those involved in the research. It is very encouraging to see.
|
||
| Name: Natalie Negri Our child's name: Jett David Negri The date our child was born: 20 January 2004 The date we lost our child: 03 February 2004 The hospital where our child was treated: Royal Children's Hospital - Melbourne, Australia The physicians who treated our child: Dr J Tibballs, Dr Rod Hunt Our story: At this stage I can only say that we lost our beautiful boy to a diesase that I never imagined could exist. Being told that it is fatal is still like a bad dream. I know that Jett is resting in peace now, and that without ecmo we would not have had him for two heart wrenching weeks that we did. I love him, miss him and wonder how in today's society we cannot do anything for such a condition. I hope that by contacting the ACDA I can contribute to the research and share my story with other suffering parents.
|
||
| Name: Marie Little Our child's name: Kaylie Jeane Little The date our child was born: 8/25/1999 The date we lost our child: 9/3/1999 The hospital where our child was treated: Egleston The physicians who treated our child: Dr. Chapman Our story: I was fifteen when I found out I was pregnant. Confused and scared at first, I soon became happy. I was surrounded with love and support from all my family. Everything was going great. I was doing everything I should have done. However, I stayed very sick throughout my pregnancy and I didn't gain much weight. Then the day I found out I was having a girl, I also found out that my baby would need surgery when she was born. She had a blockage in her bowels. I went into premature labor at 4 months but it was stopped. I went into labor again at 6 1/2 months and it couldn't be stopped. At this time I just turned 16. Then on 8/25 with very little pain, I had a 4 pound 6 ounce beautiful baby girl. She immediately quit breathing. I didn't even get to hold her. The doctors came back in and told me they were transferring her to another hopital but that I couldn't go. Of course I left and made it to the children's hospital before she did. She was on a ventilator and tubes everywhere. I didn't even get to see her move because they had her on anesthesia. My mother and I stayed in the waiting room for the 9 days that she lived. Each day was like a roller coaster. One minute she was doing great- the next she was getting worse. We were blessed to have visitors everyday who came and gave their love and a shoulder to lean on. I recorded a tape of me reading children's books to her. The nurses played them over and over. She seemed to get better by hearing my voice constantly even though I couldn't be with her all the time. The doctors told me that she might have ACD because of the ups and downs and no interventions were helping for too long. On 9/2, I sat down and prayed like I had done each moment I had. This time instead of praying for her to get better, I prayed that God would give me a sign. I didn't want to see my daughter suffer and struggle for her life. I felt selfish by keeping her here to deal with tubes and medication and a ventilator. The next morning, I walked in and found my sign. My daughter was blue. I knew that it was time to let her go. So my family and I gathered in a small private room. My mother held her as the machines came off. It was too unbearable for me to do. She went to Heaven in a matter of seconds. Afterwards, everyone left and I remained in the room with her. I got to hold her for the first time. I even changed her diaper and gave her a bath. I got to be mommy. I stayed in the room for hours just holding her. The last outfit she had on was a pink dress with bunnies that I put on her. That night, I went home for the first time since I had her. I sat on the porch swing alone. I saw a little baby bunny come from out of nowhere. It looked at me and then hopped across the yard and disappeared behind some bushes. A feeling of peace came over me. I knew that it was Kaylie saying she as wonderful and that she loved me. She is my angel, my miracle. She touched so many people's lives in her short time. She had a purpose and it was fulfilled. She gives me hope everyday that life is precious and that I have a beautiful place to come to when I die. I think of her everyday. I even talk to her. I know that one day I will spend the rest of eternity with her. After her death, it was confirmed that she had ACD. I blamed myself. I thought I did something wrong. After researching the diagnosis, I learned that I didn't do anything. I hope to help aid in the research for a cure. I am now planning to get married and soon have another baby. I will definitely do more research before I get pregnant to understand my risk of this happening again. It was definitely the hardest thing I'll ever have to do- losing a child at 16 was the worst thing. I would give anything to have her back. In some ways, I feel that Kaylie will come back to me through another baby. No baby will take her place but I feel she will be part of that baby. I love you Kaylie! -Mommy
|
||
| 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
|
||
| 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:
|
||
| 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:
|
||
| 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.
|
||
| 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!
|
||
| 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.
|
||
| 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.
|
<< Newest | < Prev | 1 2 3 4 5 6 | Next > | Oldest >>
Powered by PHP guestbook 1.5 from PHPJunkyard - Free PHP scripts