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| Name: Chris and Valerie Nikirk Our child's name: Susanna Day Nikirk The date our child was born: 07/02/01 The date we lost our child: 07/13/01 The hospital where our child was treated: Boston Children's Hospital The physicians who treated our child: Dr. Laussen Our story: Susanna is our first child after suffering a mis-carriage a year and half before. During one of our ultra-sounds the tech thought the left side of her heart seemed small so, we were referred to St.Francis Hospital, CT for a level II ultra-sound were it was confirmed. After several ultra-sounds on Memorial weekend we were told that she might have Hypoplastic Left Heart Syndrome and would require heart surgery when she was born. We were referred to Boston Children's Hospital (which by my opinion is the best hospital the doctors, nurses, and staff our wonderful)since that is a hour and half drive all of my prenatal treatment was trasferred to Brigham and Womens Hospital next door so that once she was born she could be taken immeditaly over there. We commuted every week to Boston (not so bad considering it's fun city) until she was born at 41 weeks. She was beautiful. My husband and I got to hold her for a few minutes before they wisked her off to Boston Children's were she was given an ultra-sound to look at her heart. She never cried she only made kitten sounds. She was having trouble breathing during the ultra-sound of her heart, so they did a chest x-ray and discovered that she had pneumothrax. They drained the air out of her chest and hoped that would stablize her breathing but it did not. Meanwhile, her heart did seem small and there were a few other things wrong with it, but she did not seem to need immediate surgery. For now the heart would take a back seat to her lungs which were getting worse. The next day we were told that she had PPHN later that evening they tried nitric oxide which she did not seem to be responding to. At 1:00 in the morning we were called to the hospital to be told that she was going on ECMO. She was on ECMO for 84hrs before they tried taking her off. She did well for the first few hours, but they did not want to risk anything so they decided to keep her on one more night. We were so hopeful we had went to Boston expecting open heart surgery and were told that she might not requre heart surgery at all. Then the rollar coaster decided to take a big crash. The next morning we went to the Hospital to find out that over night she had returned to the state she was in when she got there before ECMO. They wanted to do a lung biopsy to rule out ACD and they sent her to the cath lab to see how the blood was flowing through her heart and veins to the lungs. The results of the cath lab were good and the intial results of the biopsy showed that she did not appear to have ACD, but they did not know what she had or how to treat it. We were hopeful again. We waited until the next day to find out the final results of the biopsy. We were taken to the "bad room" were we had been many times through out this rollar coaster. We were told that she in fact did have ACD. A very rare lund diease that was irreversible. A word you never want to hear. They took her off ECMO and took the cannulas out so that we could hold her for the first time since the delivery room. I never saw her eyes open, never feed her, never heard her cry etc...However, my husband did at least once get to see her with her eyes open and luckly got a picture before everything went bad. He was ready to give her the world in that moment. We held her as she passed away. She died in his arms at 1:25pm on July 13th. She will always be daddy's little girl. We will never forget you Susanna. We love you very much. I am thankful for the staff at P6 (CICU) at Boston Children's Hospital, family and friends. Most of all, I am thankful that she is in Heaven with her big brother or sister and that we will see them again.
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| Name: David and Karen Schmidt Our child's name: Breanna Barbara Schmidt The date our child was born: 4/14/01 The date we lost our child: 6/13/01 The hospital where our child was treated: Kaiser Los angeles, Huntington memorial, Children Hospital Los angeles The physicians who treated our child: Our story: Breanna is our first baby. Everything was fine during the pregnancy period, so we were expecting to bring home a beautiful and healthy little girl. During labor time, Breanna showed some signs of distress;therefore right after born via C-section, she was taken to NICU . Later on, doctor informed us that she had pneumothorax and pulmonary hypertension. She then was transfered from Kaiser Fontana where she was born to Kaiser Los angeles by helicopter on early Easter sunday. Over there, she was treated with nitric oxide Her condition seem to be improved at first, but around 1 am the next morning , it got worst. She then was transfered to Huntington Memorial for ECMO treatment. Just like the last time, for a first couple of days, she showed signs of improving. However, almost 3 weeks on ECMO, her pulmonary hypertensin did not resolve. Doctor told us that the only cure for her now was bilateral lungs transplant. She was taken to Children Hospital Los angeles for lung transplant. Over there, still on ECMO, she was given prostacylin, a medicaton help to dilate her blood vessels. Doctor hoped that with that medication and ventilator, they coud wean her off ECMO, so if donor available she could have a transplant surgery. However, because of blood clotting c complication, she was take off ECMO in emergency situation. Doctors were all afraid that she would not make it. What a strong litle girl, she went though it and was responded very well to the medication. There were days that she needed just litlle support from the ventilator and nitric oxide. These days were best days for us too. We were able to see her open her big beautiful brow eyes, move her ams and feet, and throw a temper tantrum. But, on June 11th, her condition started climbing down, she needed more support from ventilator and much higher dose on prostacylin to be stable. June 12th, doctors almost coded her. June 13th, she was coded and died in mommy 's arm at 2:45pm. That was the first time and also the last time her mommy hold her. And that was also the first time we saw her without a ventilator tube in her mouth. Her autopsy revealed that she had Aveolar Capillary Dysplasia which her doctors at Children Hospital suspected. We are looking for to have more children, but we are also afraid of the odd that our next child may be affected with that disease. There is no answer for that, so we just pray and hope for the best.
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| Name: Kathleen Kitching Our child's name: Jalen Adai Kitching The date our child was born: 4/5/01 The date we lost our child: 5/11/01 The hospital where our child was treated: Massachusetts General Hospital The physicians who treated our child: Dr. Huttner, Dr. Robert Insoft, Dr. Ryan Our story: When my sweet Jalen was born, he appeared perfect in every way. He seemed fine. I fed him twice by breast and he was doing ok. That night I noticed that he was breathing funny while he slept. I called the nurse in and she said she would take him to the nursery and put him under the warmer.After I had not seen him or heard from the nurse after a half hour, I went to the nursery. I saw a couple of doctors around him working on him. The nurse came out and told me he had tacypnea (fast breathing) and he was put under the oxygen hood until it resolved which they hoped would be in couple of days. 2 days later when we were feeding him, he chocked on a feeding and turned blue, they called a code blue and doctors came rushing. They resuscitated him and he was transferred to UMass Hospital Newborn intensive care unit. He went from there to Mass General Hospital were he was put on a ventilator and Nitric Oxide. He seemed to be responding, but then he got progressively worse. They then put him on ECMO, he was on ECMO for 14 days or so. He came off of ECMO and seemed to be doing well, his pulmonary hypertension was finally under control or so the doctors thought. Well he got worse in a day or two and the doctors then determined that he had irreversible primary persitent pulmonary hypertension. My husband and I then decided that our child suffered enough and we decided to terminate care and take him off the life support that was barely keeping him alive. He died in our arms that afternoon at 3:50pm on May 11, 2001. I will never forget my child and his beautiful brown eyes and curious stare. He touched the lives of all the people in the NICU and my entire family and all my friends. We have never relied on God more for strentgh and support and most importantly peace. That is what has gotten us through this whole experience. I am looking forward to having more children. Jalen was my first and as you all know it is petrifying to get pregnant again after such an ordeal. I love my son so much and I thank everyday that he was able to spend 36 days with me.
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| 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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