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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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| Name: Katie Our child's name: Nicholas The date our child was born: 5/14/01 The date we lost our child: 2/6/02 The hospital where our child was treated: Children's Hospital Los Angeles The physicians who treated our child: Dr. Woo Our story: Nicholas was a beautiful baby whom we loved so very much. He was a brave little guy, who had a spirit that has touched our hearts (and the hearts of hundreds of others) forever. He was hospitalized 3 times in his short life, the last one being for the last 4 months... and he passed away just short of his 9 month birthday. He was diagnoised, at 2 weeks, with pulmonary hypertension; he seemed to be breathing quite quickly since birth; the doctors were optimistic he would grow out of it. After a few months they became more concerned, and he continued to have problems feeding (they associated this problem with the fact that he had a cleft palate). He was very underweight, and had difficutly sucking, swallowing and breathing....I always thought that it was a struggle for him to feed, and while he would start out hungry, he would soon get tired. Finally, in August, he got a g tube, and began gaining weight at a rapid rate. Other than the weight gain issue, he was a very bright, active, smart little boy who was, as far as his motor skills, considered advanced. He displayed no outward signs of being 'sick'- he didn't have any of the classic symptoms of pulmonary hypertension which also puzzled the doctors... He was admitted to the hospital in October, due to him catching a virus - which caused him to have great difficulty breathing. It was during this time we were told he had primary pulmonary hypertension and that he would probably need a lung transplant. In early December, we were transferred to Childrens Hospital of Los Angeles (an excellent institution). After a lung biopsy, Nicholas was officially diagnoised with ACD. We were mystified by how and why - while this was our first child, no one in our families had any other problems (except a distant cousin on my husband's side whose daughter died of heart problems a number of years ago). We began to prepare ourselves for transplant, and Nicholas remaind hospitalized ... he was on NO for a time, and responded well to that. He finally got off the NO, and was down to minimal ventalator support and little medication. And then one weekend, he took a turn for the worse, without warning ... He sats started to drop suddenly and dangerously low, and he was needing more and more support. We were told by the doctors that it was a miracle he had lived this long ... and they were amazed as to why the disease was now progressing - why had it not shown itself before?. Finally, his heart was working to hard, his lungs were sicker and he was simply outgrowing his lungs, and the doctors said that other organs were starting to be affected. He passed away in our arms, surronded by his family that loved him dearly. We loved him so much, and are so saddened by his passing ... he was so couragerous despite all the hospital stays, and actually seemed happy. I have so many beautiful memories of my Nicholas that I will treasure forever. We are waiting to hear from the doctor's at CHLA with regards to what information Nicholas' lungs can offer them... they asked that they be able to study his heart and lungs. We hope that they will find some answers.
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| Name: Teresa Thompson Our child's name: Alexis Shay The date our child was born: 04/24/1997 The date we lost our child: 05/02/1997 The hospital where our child was treated: MRH/CMC/Miami Valley The physicians who treated our child: J.Michael Komer/Connie McCarroll Our story: I was 20 years old, pregnant for the first time. Everything was fine during the pregnancy. Hardly ever was sick. Alexis was due April 11. I had her April 24 at Middletown Regional Hospital. Shortly after birth, she developed A.L.Pneumothorax which responded to needle aspiration. However, she deteriorated the next A.M. and was transferred to Children's Medical Center in Cincinnati, Ohio while being hand aspirated. There she was intubated and re-needled. By that evening she was not responding to positive pressure ventilation and had pulmonary hypertension so she was transferred to Miami Valley Hospital in Dayton, Ohio where she was placed on ECMO. She had her ups and downs. One day, they'd say she was doing better the next day she took a turn for the worse back and forth. Over the next few days she was weaned off ECMO and placed on full ventilator support. About a week later Alexis still had persistent pulmory hypertension, not responding to positive pressure ventilation. At this point ACD was considered. The tube was pulled she died within minutes. After the night before she had a turn for the good. The DR's and nurses were talking about how good she was doing. And within 24 hours she was gone "home".
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| Name: Sandy Kinane Our child's name: Meghan Abbie The date our child was born: February 14, 2001 The date we lost our child: March 8, 2001 The hospital where our child was treated: Northwestern & Children's Memorial The physicians who treated our child: Ruth Deddish, Dan Polk, Nicholas Porta, Praveen Kumar, James Collins, Robin Steinhorn Our story: Our first baby, Meghan Abbie, was delivered full-term on Valentine's Day. She did not breathe on her own, and was taken immediately to the ICU where an emergency team worked with her non-stop for 5 hours to stabilize her. My husband & I knew she had some complications, but we must have been in denial & we thought we would be taking her home in a few days. Over the next 2 days, we realized that her condition was much more serious than we thought. On day 3, we were told that they had done all they could do at Northwestern & she needed to be transferred to Children's where NO could be administered. We went to church everyday to pray that she would recover, and we would have many happy years with her. We dreamed of what she would be like growing up. By day 5, she was weaned from the NO, but continued on a respirator with oxygen. Day 14-she had to be started on NO agian, which could not be weaned. It seemed as though time was running out, and Meghan was still not able to breathe on her own. We were still trying to remain hopeful, but we knew the prognosis was not good. Day 16-they suspected ACD, but there may still be some available options. She was started on Prostacyclin, which she responded to for the first 24 hours, and then returned to her prior state. Our excitement was quickly dashed. They experimented with Viagra, but they were very uncertain about it. Meghan didn't respond, & was getting progressively worse with each new day. Day 19-we were told that there was not much reason to continue treatment without any improvement, but they would continue to search for answers. We could not imagine going home without our baby. Day 20-I held my baby in my arms for the first time. She never opened her eyes, but seemed to enjoy it for a few seconds. She started having problems, & they had to take her away. She was too fragile that day for my husband to hold her, so we waited another day. Day 21-Kevin held her for the first time. It was quite a site to see her in her father's arm. However, it wasn't long before her condition declined rapidly & her heart stopped-she was revived. We knew then, that it was time to stop prolonging her agony. We stayed with her for as long as we could that night. Late at night, she openerd her eyes & kept staring at me & then to her dad & back & forth. This was unusual because she had been on medication that paralyzed her & made her sleepy. She grabbed onto our fingers & did not seem to want to let go. It was as if she was saying goodbye, & telling us that she loved us. It was a tremendously emotional night that still remember like it was yesterday. Day 22-Meghan too her last gasp for air & became an angel in my arms on a sunny March afternoon. We saw her beautiful face for the first time without tubes. She was perfect! I never wanted to let her go. We are so blessed to have had her in our lives & thank all our friends & family that were, & continue to be supportive through this difficult time. We always think about those that cared for her at the hospital. They were so great at helping us through the emotional ups & downs of Meghan's 22 days. Meghan, you will be forever in our hearts.
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| Name: Tina and Bruce Chamblee Our child's name: Aidan Cole Chamblee The date our child was born: January 8, 2002 The date we lost our child: January 25, 2002 The hospital where our child was treated: Children's Mercy Hospital of Kansas City The physicians who treated our child: Dr. Kilbright Our story: Our son was born on a Tuesday at 8:31 a.m. and weighed 6 lbs. 5 oz. and was 20" long. He was so beautiful. We scheduled a c-section due to the fact we knew he had an omphalocele and felt this to be the safest way to have him. He immediately had problems with his breathing and looked grey when they showed him to me before taking him to the NICU to prepare him for transport to CMH. We got to have a few minutes with him before he was taken at 12:00 to CMH. It was very hard the first couple days because I was in one hospital and he was in another. My husband went with him and stayed with him a lot until I was able to get out of the hospital to be with him on Thursday. He was in critical condition at first with Pulmonary Hypertension and after a couple days he was getting better, so we thought. They weaned him off his paralysis meds and other sedation meds and he was moving around and opening his eyes but he seemed to be in pain and they had to put him back on more meds. They did several echos and his hypertension even went away. Then all of a sudden he started getting bad again and they had to put him back on the big ventilator and were considering putting him on ECMO. They decided to do a biopsy on his lungs and after a day of waiting and wondering for the whole family we found out he had ACD and were told he would not survive. We then had a decision to make and we took him on the ventilator at 5:30 p.m. 17 days after his birth. They told us it would be minutes and it took him 45 minutes to go. He had a strong heart and will to stay with us but his little lungs just couldn't do it. We were able to take our time and be with him as long as we wanted before they took him on the ventilator. His older brother, three and a half, held him and kissed him and doesn't understand why God had to take him (but who does understand). I held him in my arms until well after he was gone. He went so peacefully and was so beautiful. We love him and will miss him forever. We had decided that Aidan would be our last child and now I don't know what I am going to do without him. I have mixed feelings about having more and right now I am sure my husband doesn't want any more because of what we are going through this time. It is going to take a lot of time to get past this and I am sure we will. God Bless!
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| Name: Nancy Laquerre Our child's name: Christopher Laquerre The date our child was born: September 10th, 2000 The date we lost our child: September 28th 2000 The hospital where our child was treated: Childrens Hospital Boston, MA The physicians who treated our child: Dr. Wilson, Dr. Jaksick Our story: At 7 weeks gestation I was having abdominal cramping and had an ultrasound at my OBGYN's office of several years in Natick, MA. The Doctor said that there is something wrong with the umbilical cord or I may have been bleeding internally or that thre was a twin that had possibly died. So we went for a second opinion to Brigham and Womens Hospital in Boston. Their level 3 ultrasound revealed a healthy 7 week old fetus. We were releaved. I continued my care at the Brigham and at my 20 week ultrasound there were several things seen that were abnormal. The baby had an omphalocele which is a birth defect of the abdominal, enlarged kidneys, bright spots on his heart, and a folds in the back of the neck. We did an amneo right away and it revealed that my son had an extra Y chromosome which is about a 1 in 1000 occurance it just usually means that my son would be taller than aveage and maybe have some trouble with acne when he was older and possibly agression because of the extra male genetic material. But the other findings were not common with a child of 47xyy karotype. Anyway, as my pregnancy progressed my sons kidney's got more enlarged and we had met with a surgeon who was to repair his omphalocele once he was born. At about 27 weeks I developed Polyhydramnois. My water broke at 32 weeks because of the abnormal amount of amniotic fluid. I went to the hospital where they stopped my labor with magnesium sulfate for four days. I then developed an infection and so did the baby. So they started me in labor with betosin. I was so exhausted I was in labor all day on Saturday and finally pushed for two hours and he was stuck in the birth canal face up and we decided to do a C section because both myself and the baby were not doing good at this point. During the surgery my husband and sister were in the OR. They delivered my beautiful son he wieghed 5lbs 4 oz at only 32 weeks gestation. I quickly saw him then my sister and husband were insturcted to leave the OR immediately. I was bleeding to death. Evidentally when they pulled the baby out of me they tore my uterus and were trying to repair the damage so i would not die. I lost lots of blood and finally they sewed me up. Meanwhile, a Doctor from Childrens said Christopher looked good and was just a bit premateur and thought he was going to be fine. I was wheeled into recovery and felt so horrible I thought I would die if I let my self fall asleep. The next day my husband and I were informed that Christopher was not doing well and they would like to put him on ECMO to rest his lungs because of their prematuraty and give them a rest for a day or two and try to cycle him off later. They also gave him surfactant. I was having the most incredible back pain of my life and the nurses kept giving me stronger and stronger medicine and nothing relieved it. On the second day after my surgery I was wheeled over to see my son for the first time after seeing him when born. I couldn't believe the huge canulars in his neck and all the tubes that were connected to him. I knew right away that he would not live but I never told anyone. I remember getting up from my wheel chair to look at him and almost passing out and the nurses at Childrens getting me juice. My pain was worse then the labor pain and I could only stay a few minutes to be with my son. I felt like a horrible Mother at this point. I was getting calls from Childrens Hosptial telling me that Chritopher was not doing well and I was in so much pain and sick from the blood loss that I could not even speak to the Doctors on the phone and I told them to call my husband at home or on his cell phone. I knew wometing was really wrong with me and kept wondering who would die first me or Christopher. I tried so hard not to cry and to focus on getting better so I could be strong for my son and be a good Mother. I was up for three nights in a row with this back pain in and out of the shower trying to get relif asking for a doctor and being ignored. I finally on the third day called my sister screaming in pain who then called the nurses station and demand I be seen by a Doctor. The nurses sent a Physical Therapist instead. Then a Doctor came in actually the anestheologist who gave me the original epidural for the surgery and said that my back was spassiming and lets get an xray of my kidney just to rule that out. Well the xray revealed a blockage in my left kidney but they did not know why and my kidney was filling with fluid. I was wheeled back up to my room and as I was getting to the floor I saw my husband stepping off the elevator. I got up out of my wheel chair and ran to him and said " There is something wrong with my kidney and I may need to go back to the OR." He hugged me and then told me Christopher needed surgery too and he needed to be placed on another level of the ECMO. We went back to my room and we were cring and losing our minds at that point. I kept wondering who was going to die first me or Christopher. I called my sisters and they arrived. My inlaws were in my room and they kept asking what was wrong with the baby and my husband kept trying to tell them through his anger that there was something wrong with my kidney and that Chistopher needed surgery once again. My sisters arrived. I grabbed them and I was so scared. They came with me for another test on my kidney. This IVP die test saw that I had a blockage on my ureter. The Doctors came into my room and John was saying there was no God. He kept saying it. My sisters were hugging each other and shaking The Doctors told me that this is real and that I have the best surgeon a Urologis and that we need to try and unblock the kidney using a stent. They thought since I was having life threatening bleeding during the surgery that the surgeon was trying so hard to control the bleeding that he sewed my ureter to my insides somwhere or nicked it or a stitch was blocking the ureter. So I headed down to surgery and so was my little boy at the same time. I remember sitting up straight as the Doctor himself wheeled me down to the OR on the gurnie. I woke from the anesthesia and they had unblocked my kidney with a stent and they did not need to go abdominally which was the only good thing that hapenned in this whole experience. So now I had was pretty much out of the woods and my son was still figting for his life. We finally got discharged from the HOsptital and vistited Chrisotpher staying at my Mothers house who lives closer to Boston each day. Holding his hand and watching him open his eyes as he recognized our voices. I ran out and bought every book I could find at the local pharmacy and read to him, played music for him and told him about his dog Sasha and all his cousins. The Doctors kept trying to cycle him off the ECMO but he could not do it. His blood gasses were wrong and they nurses said he kept shunting. Seventeen days later the Doctors decided they would do a lung biopsy and it revealed Alveolar Capillary Dysplasia. We took my beautiful baby boy off of life support and he died just minutes later. I hated my life and everyone in it after he died. I am still so angry that he had to suffer like that. It has taken me 15 months to write my story on this web site. Since then I have given birth to our daughter Lindsey. She was born on October 30th 2001 at 36 weeks gestation healthy and happy. I don't know why these horrible things happen and I feel lucky to have my daughter. I miss my Christopher so much as I am sure you all miss your babies. I am always here if any of you need to talk about your experience or just to tell me how it is just wrong for a child to suffer from ACD. Nancy Laquerre
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| Name: Barrie & Jackie Woodward Our child's name: Hannah Louise Woodward The date our child was born: 28/10/01 The date we lost our child: 28/11/01 The hospital where our child was treated: Glenfield Hospital Leicester The physicians who treated our child: Mr Firmen Our story: Our daughter Hannah Louise was born atthe North Devon District Hospital at 7.09 p.m. on 28 October 2001. She was 8lb 14oz (4kgs) in weight, full-term and appeared to be healthy although quiet. Between then and lunchtime the following day we noticed that she was very subdued, never opened her eyes together, just the occasional wink of one at a time, and that she was every now and again looking a funny shade of bluey/purple. When we mentioned the colour changes to the nurses, by the time they reached us she was looking pink again. Even when we mentioned her colour to the paediatrician who checked her she was pink as could be and he was not worried. Next time it happened a midwife just happened to be in the room and she took one look at Hannah and took her off to the other end of the ward to see the paediatricians. Next thing we knew she was being rushed down to the Special Care Baby Unit on oxygen. It just hurtled from there - we were shipped to Bristol Childrens' Hospital where her heart was checked and found to be OK, from there to St Michael's Hospital in Bristol where she spent a very rocky week on ventilation and lots of drugs primarily being treated for the symptoms of PPHN. As things were getting no better ECMO was suggested. They managed to stabilise Hannah enough to allow her to travel by helicopter to Leicester where she was put on an ECMO machine. She stayed on this for seven days, came off it and appeared to be doing initially OK. At this point she was also diagnosed as having an eye problem - her pupils were fixed and dilated although she was reacting to light. An ophthalmologist checked her and said that she had a mis-shaped iris with strands still remaining over the eyes that should have parted following birth. The problem, however, was not distinct and they could not say to what extent she would be affected until she could sit in front of a slit lamp at six months of age. They said it could just be a variant on normal or something worse but until that time they would not know. Following the initial improvement after ECMO she deteriorated again and was put on Nitric oxide. Again she initially made good progress, came off the Nitric Oxide and appeared to be getting better. The doctors,however, suggested a lung biopsy to rule out or confirm ACD. At that stage we were still hopeful as she appeared to be doing so well. Following the lung biopsy, however, she had to go back on the Nitric Oxide. They tried to wean her onto Prostacycline by IV and also by nebuliser but she still deteriorated. We had to wait a week for the lung biopsy results - the longest week of our lives, riding a rollercoaster from which we could not escape. On 28.11.01 we were taken aside by the Consultant Team and ACD was confirmed. Late that evening we removed Hannah from the machines and held her while she died. We cuddled her until she was gone and were there with her which was important. We took hand and foot prints and dressed her in pretty clothes and put her to rest in a crib. The nurse who helped us was absolutely fantastic as were all the staff at Leicester - we cannot thank them enough for their support. We have so many questions which are as yet unanswered. We are waiting to see a geneticist but understand that they may not be of any help as ACD would appear to be a very rare condition that no-one knows much about. We can only hope that in years to come and with current research, more answers will be available. The biggest one I suppose being why did it happen to us and will it happen again? Although Hannah was only with us for short a short period of time, the impact she has had on our lives has been incredible. The love we have felt cannot be put into words. Barrie & Jackie Woodward
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| Name: Elena Lewis Our child's name: Shane Andrew The date our child was born: 06-02-01 The date we lost our child: 07-10-01 The hospital where our child was treated: Children's Hospital of Los Angeles The physicians who treated our child: Dr. Philippe Freidlich & staff of 3west Our story: Shane was our first-born and of course, we were (our entire family) was so excitied for his arrival. He was born at Torrance Memorial in California and was airlifted the day after his birth to Children's of LA due to severe Pulmonary Hypertension of a Newborn. At his time, we thought ECMO would rest his lungs and he would heal. Through several procedures, nitric oxide, ECMO, etc., Shane's condition stabalized, but was not getting better. By June 15th, we were told that he had a rare lung disease,ost likely ACD, and would need a lung transplant. Our strong, little boy held out as long as he could. By July 10, still waiting for a transplant, he had suffered some damage to the kidneys and could no longer be a candidate on the list. Ultimately, we had to decide the most comfortable way for our Shane to pass. I finally got to hold my precious one in my arms as he gently took his last breath. He died in my husband's arms early evening of July 10. Shane's autopsy report confirmed Alveolar Capillary Dysplasia. Andy, my husband,and I are doing okay, but of course, we are baffled as to why this has happened. We plan to partake in the ongoing research because we want to have a family. I have lots of questions. Maybe someone might know---could this be caused by anything environmental? Our doctor says no because they haven't seen enough cases relating. But, there have been some very strange things happening at my place of employment. Please write if anyone has any information. Thank you, Elena Lewis
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