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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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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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