Name: Harry & Lisa Durand
Our child’s name: Olivia
The date our child was born: 11/2/2001
The date we lost our child: 5/23/2002
The hospital where our child was treated: Ellis, Albany Med & NY Presbytarian
The physicians who treated our child: To many to remember
Our story: Olivia Leona Durand was born on November 2, 2001 (All Saints Day). She was the third child of my husband Harry and I and finally the little girl we had hoped for. I had Gestational Diabetes with her and my previous pregnancy, but my other two boys were healthy and I had assumed the same would be for her. She was born a few weeks early and still weighed over 8lbs. I had her cesarean section and was told that she ingested some amniotic fluid during delivery so she would have to go to the NICU unit. I never really worried because they said that was very common and I never expected to have a sick child.
This birth was different then the other two. I did not feel good at all after delivery and was very tired. I could hardly wake up and did not hold her until the next day. When I did see her she had tubes in her head and the oxygen in her nose. She was still so beautiful. The NICU nurses assured me that in a few days she would be fine and I could take her home. Still no worries. As promised I took her home from the hospital and life was good. She was very different then my other two babies. She was a little smaller then my first son Joseph 10lbs 7oz and Alexander 10lbs 6 oz, but that was to be expected because she was a girl.
Olivia was never was a big eater, but she would nurse as expected. When she was around 4 months we were told to introduce her to formula and cereal. She did not do well with either. She could not really keep her food down and would projectile vomit most of the time. I was worried because she was not gaining any weight and she would sometimes turn blue after her nightly bath or when vomiting. The Doctor told me not to worry that not all babies are the same and it is ok that she only gained a few pounds since birth. She then had strep throat. My two boys had it and she was acting different so I took her to the Doctors. They told me that babies can not get strep and especially when they are nursing. Well, they were wrong. She had it and was treated.
There was something inside me that I did not realize until after she passed, but I knew she was not going to be here long. I bought enough clothes to outfit a dozen babies. I would also buy sizes bigger all the way to size 4 thinking that if I bought the clothes she would wear them. I even told her Godmother that I do not worry about the money I am spending because I feel like I will not have her forever. Stunned and angry at me she questioned why I would say such a thing and I did not know where that came from. I guess a mother always knows.
It was April 7, 2001 and I was at a baby shower for a friend. I had Olivia dressed up like a princess and everyone was looking at her and commenting on her beauty. Someone had asked me if I thought her lips looked blue and I explained that I had taken her to the Doctors and she is little and everything is OK. About 10 minutes later I looked at her again and I realized it was NOT OK to be blue. I abruptly left the shower and told my Mother I was taking her to the hospital. Of course my Mother thought I was over reacting, but was later glad I did.
When we got to the hospital her oxygen level was 47. They thought their equipment was not fitting correctly so they took it again and after 5 tries they realized something was wrong. She was not crying or in pain, just sleepy and a tinge blue. They told me she had broncholitis and she needed to stay. We were in this hospital for a week and she was in an Oxygen tent. When she was in the tent she was pink and happy and beautiful. When we would take her from the tent to feed her or hold her, her lips would turn blue. I knew something was not right. The Doctor insisted that these things can take a few weeks but I had a sick feeling he was wrong. We insisted that we were transferred to a better hospital that had a PICU unit. After resistance from the Doctor we transferred to the hospital and were told they thought she had a hole in her heart that never closed up during birth. As bad as that sounded it was fairly common in newborns and a simple operation would help her. We were glad that she was diagnosed and would be fixed.
The next day the Heart Doctor came in to do an Echocardiogram to assess the situation. When he was doing the procedure we could tell he was surprised and concerned. He told us he would be back and we waited. When they returned they told us that they believed she had Pulmonary Hypertension. A rare disease in infants that usually is characterized as high blood pressure in the lungs. They said it is a hard thing to treat especially in infants, but they were doing their best. They gave her Viagra to help dilate her veins and then for the first time in that hospital with a baby they tried Nitric Oxide to bring the pressures down. From here she went downhill fast. She went into cardiac arrest five times in one day. I remember watching them bring her back each time thinking it was over. They finally stabilized her and told us that there is nothing more they could do. One of the Doctors had called New York Presbyterian Hospital in New York City and hoped that they may have a solution because they had a group there studying Pulmonary Hypertension. Olivia was very sensitive and when she got mad or was not happy her blood pressure would drop and her heart would race. They were not sure if she could make the trip to New York City, but we felt that we had to at least try.
We made it to New York City and that is where she spent her last 32 days. When we first got there they put her on an Echocardiogram Machine, which actually performs the functions of the heart and lungs. They warned us that most babies get large heads full of blood and bleed from their nose and mouth and wanted us to be prepared. When we got there they hooked her up and she responded well, opened her eyes, smiled at us and gave us hope. This machine was very scary and it was manned 24 hours a day. We could not hold her because there were canulas going into her heart and she had to be still. They told us that this would give her time to heal without causing brain damage or hurting her heart or lungs. The Pulmonary Hypertension specialists visited her often and were developing their plan. As the days went on they thought they could remover her from the machine. They did not want to leave her for more then one week because it could cause internal bleeding. When they took her off they had her covered in the blue scrub towels they use in the hospital and had one on her chest and body and one on her head. She reminded me of the Virgin Mary and I still had that feeling like the end was near.
Each day she got worse, not better. They could not keep her blood pressures up and the pressures in her lungs down. The Doctors tried every combination they could think of with medicine and ventilators and they would keep her somewhat stable, but not really get any further ahead with a solution. After 32 days of 24 hours 7 days a week attention Olivia could not fight anymore. The Doctors and Nurses knew that there was nothing they could do and she would be fading away. My husband had left that morning and by 4 they had told me there was nothing left to do. My husband was taking my two sons to their ball game and then was going to come back to the hospital. When I called him with the news he realized he could not leave and make it there in time and wanted me to call him when she passed (we were 3 hours from home). My Mother was on her way up to stay with me until my husband arrived. It was 6:30 or so and I was holding Olivia on her bed. The first and last time that I was able to hold her in 38 days. Her heart rate slowly started to drop. I prayed that she would not leave until my Mother arrived. My Mother walked in the room and gasped when she saw me on the bed. She asked what I was doing and if she was doing better. I told her that this was the end of the road for Olivia and my Mother leaned over and kissed her. Within minutes Olivia passed away.
During her stay at the hospital in New York I decided to start emailing my family and friends so they would not bother my Husband or my Parents while they were trying to get through this. I did not want them having to go over every detail each and everyday. The amazing thing was that I started with a handful of friends and family and each day the group would grow. I would give detailed explanations of what the Doctors were thinking and doing and what our hope was for the outcome. People would email me back with their prayers and wishes and ask to be added to the email list. There were people I had never met that were in one way or another connected to someone I knew. Churches were having masses in Olivia’s honor, families were having prayer groups and everyone was having faith. By the end of Olivia’s life there were over 150 email addresses that I personally sent to and then those recipients would pass it along to their friends. The email list was actually a worldwide chain of love reaching Europe and several other countries.
Several weeks after Olivia died the Doctor in New York called me and told me that the autopsy discovered she had Pulmonary Hypertension and that was the cause of death. She told me that she was not really convinced of their findings and wanted permission to send Olivia’s slides to some other Doctors to get their opinion. Dr. Claire Langston was the Doctor who confirmed the New York Doctor’s suspicion and told her that Olivia had died of ACD. When I heard this I tried to get as much information as possible on this disease and tried to make senses of it. This is when I found ACDA. I was able to talk to other parents, share my story and make it real. I have met wonderful people all over the world that have lost a child or children and I have a connection with everyone of them.
Olivia was only here 5 ½ months, but impacted many people forever. From the day she was born she was adorned by everyone that met her. I dressed her everyday like she was going to a party. She was with me every minute of everyday from the day she was born until the day she died. She went to work with me everyday and everyone loved her. When she got sick she touched people literally all over the world and all different ways. At her funeral services people came to say goodbye to her that I did not know. They thanked us for the opportunity to be part of her illness and claimed that she had helped them. My husband and I found ourselves consoling people that came instead of us being consoled. I guess we will never know why this had to happen to Olivia or why it continues to attack other children. I do believe that everything in life happens for one reason or another and that we do not need to define ourselves or our lives by these tragedies. We talk of Olivia often and so do my children. We do not try to hide the fact that we lost her and we try to educate everyone we meet. I volunteer at the Ronald McDonald House at the hospital that helped us so I can let parents know they will get through their hardship, I did. Olivia is gone for now, but will always live in our hearts.
Added: November 14, 2007
Our child’s name: Charlie, Twin A and Twin B
The date our child was born: May 17, 2006
The date we lost our child: June 18, 2006 and twin termination at 19 weeks
The hospital where our child was treated: SD Children’s Hospital
The physicians who treated our child: Knight, Hanold, Lane
Our story: Charlie was born with severe hypoplastic lungs in the absence of other structural anomalies. The diagnosis was atypical alveolar dysplasia. We adore him and he lives on in us, every single day. I went on to have two affected boy/girl twins; the diagnosis for all three kids: primary pulmonary hypoplasia. The twins’ lungs were unaffected by ventilation and therefore lent themselves to a clearer clinical picture. It is theorized the pathogenesis of primary pulmonary hypoplasia may hold answers to the foundation for most congenital pulmonary malformations incompatible with life. Our case may help forward all cases. It is deemed autsomoal recessive primarily, there always exists a chance of there being a gonadal mosaicism among nonconsanguineous parents in which there is recurrence. In the case of primary pulmonary hypoplasia, which is extremely rare to find in utero if at all, the dominant gene theory is less likely.
Added: November 12, 2007
Name: Gary and Vanji
Our child’s name: Xzendria Leigh
The date our child was born: July 27, 2005
The date we lost our child: August 8, 2005
The hospital where our child was treated: Lucille Salter Packard & Kaiser Permanente
The physicians who treated our child: many wonderful professionals
Our story: We lost our sweet first daughter to ACD after 12 days of hoping things could be solved and she would come home with us. We are so greatful for her life, and for the first 19 hours that she sustained her little body before her ACD issues displayed. I think of her often and keep her ashes near me always. We were lucky to have taken photographs that first entire day of her life as family visited with us in the hospital. To go to sleep looking forward to taking her home the next day, only later to be awoken by a back-lit doctor in my sleepy disbelief saying “I need to talk to you about your baby. Something is wrong and we don’t know exactly what.” began our rollercoaster. Xzendria died being held by Gary and I, with her grandparents and aunt and uncle there to offer support for each of us. We were enlightened by her existence and each day hold her little sister close and tight, appreciating every moment. Hug your children and know their lives are fragile. We love you baby. Your name is that of an angel.
Added: November 11, 2007
Name: Ali Lundmark-Sutton
Our child’s name: Saige Theresa
The date our child was born: 12/04/04
The date we lost our child: 02/14/05
The hospital where our child was treated: Riley Children’s Hospital in Indianapolis, IN
The physicians who treated our child: Dr. Mara Nitu, Dr. Bysani and Dr. Ahmed
Our story: I had been in labor for probably a week before I went to the hospital. It wasn’t pain, just pressure…until that last day. By 9:30, Friday night, December 3rd, I couldn’t take it. At 11:30, the nurse came in and looked at the fetal monitor. She left the room pretty quick and came back, put me on oxygen and informed me that they were going to have to do an emergency C-Section. Oh boy, did I freak. Saige’s heartrate had dropped to 60 and I was only dialated to 2. They didn’t want to take any chances, since I still had a long way to go. I had Saige at 2:00am on Saturday morning. She was 8lbs. 1oz. and 20 1/2 in. long. As healthy as can be…or so I thought.
The nurses brought her in my room around 11 that day. I was so drugged up, but still held her and tried to feed her. She wouldn’t eat. I wasn’t sure if that was because I wasn’t doing it right, or what. I have 2 neices, one 5 and one 2, and helped with both of them as babies. So, it wasn’t like I’d never fed a newborn before. Then I figured that maybe I was just too drugged up. So, the nurse in the nursery tried to feed her and had the same problem. She gagged and just wouldn’t eat. She switched her formula and that helped. I guess they thought that was the problem.
The next day, Sunday, I called the nursery around 10:30 to have them bring Saige to me. It rolled around noon and they still hadn’t. I just figured that they were really busy. It was time for pain killers, so I called down and told them to not bring her, I would call again when I woke up. The nurse who answered told me that another nurse was on her way to talk to me. It wasn’t a good conversation. She came in and said that Saige had turned dusky(bluish) in the nursery and they wanted to do a spinal tap on her. I started bawling. Here, my brand new baby, and a “procedure” already. Of course, I allowed it. They admitted her to the NICU and did the spinal. The results came back clear. I was so happy.
The doctors ended up diagnosing her with pneumonia. They said this was probably a result of my c-section. The first time I walked in the NICU and saw my precious baby in the incubator with an oxygen hood over her whole face, I could have died. It took a few times before I could handle it. The had her on oxygen for a few days and that was it. She seemed to be fine.
I went home on December 7th and they kept her until December 15th, which was when she finished her antibiotics and she came home. I was so excited to finally have her home. I found out after she came home that they had done an echocardiogram on her in the NICU. This was an ultrasound of her heart and lungs. They found the pressures in her lungs to be in the 50’s. The normal pressure should have been from 15-20, but because of her pneumonia, they weren’t too worried.
I had to take her to the cardiologist for a follow-up about a week and a half after she came home. I took her on January 4th and her pressures were still high. Her cardiologist called me and said that he wanted me to get her to Riley Hospital in Indianapolis, IN as soon as possible. That in itself scared the c*** out of me. On January 7th, I took her to Riley Hospital for the first time. The cardiologist, Dr. Ebenroth, from Riley decided to do another Echo on her to check her lungs for himself. He backed up exactly what her cardiologist said. Then came the bad news. He then told me that she might have PPH(Primary Pulmonary Hypertension). It is a lung disorder, which causes high pressures, but is also not curable. So, I said, “Basically you’re telling me that if this is what she has, that I have to just sit back and wait for my baby to die?” He answered with the most horrifying answer possible. “YES”. I could have dropped right there, but I wasn’t giving up without a fight.
They admitted her to the heart unit that day and put her on oxygen to see if that might help. The next day, they did another Echo on her and no change in her pressures, but I do think that the oxygen was helping her breathe.
I hadn’t actually realized how much of a problem she had breathing until then. I started thinking about how she was when she was home. I would feed her an ounce and while burping her, she would fall asleep. I would have to wake her up, after almost every ounce. She grunted all the time. That stopped in the beginning of her being on the oxygen. She actually started eating and sleeping better.
I took her home on the 11th of January and had her home for another week and a half. They had me schedule her for a cardiac catheder on January 20th. This was a test where they would knock her out, intubate her and then put a catheder straight into her lungs. They would test her lungs without anything special. Then they would test her on 100% oxygen, and then add Nitric Oxide to the oxygen and see if her lungs react to that. If they would open up at all. If they do, that is a good thing, and then they have a medication to put her on at home.
Well, her lungs did react, but not as much as they would have liked. A little was better than nothing. They had decided to keep her for 24 hours for observation. That night, Thursday, she was having problems. I fed her and within 20 minutes, her oxygen saturation, which should be above 90, was dropping into the 70’s. About an hour after she ate, it came back up. This continued to happen all that night and the next day. The doctors just decided to stop feeding her. They put in a feeding tube and wanted to see if that would stop the de-sating. They also decided that in a week they were going to try and do a lung biopsy to see if they could figure out what was wrong with her. They wanted to wait a week just to give her time to rest after her cardiac catheder.
On Saturday morning, January 22nd, around 7:00AM, I got a, not so nice, wake up call. They were rushing Saige to the ICU. They couldn’t get her oxygen to stay up. I was so terrified. They got her there and told me that they were going to have to intubate her to give her higher amounts of oxygen then she could get through the nasal canula. They also told me that they were going to try and put in a central line. This is someting they surgically place that has spots for about 5 different IV’s. It is so they don’t have to stick her numerous times. They put it in one place and they hook up all the IV’s to this one thing. While Michele(my friend who went with me to Riley) and I were in the waiting room, a doctor came in to tell me that Saige was doing worse than when I left her. I asked him if she was going to die and he said that it was possible. I lost it. I just couldn’t understand what was going on. They had no idea what was wrong with her and she might die. I didn’t know how to deal with that. So, I cried for the next half hour, until the doc came back in and said she was stable. I gave him the biggest hug…probably scared the poor guy. He was an intern. I got to go see her shortly after that. The saddest sight in the entire world. Blood everywhere and my poor baby laying there with tubes coming out all over.
Then, I found out that they were going to have to put a chest tube in because when they were losing her, they had to “bag” her. They had to bag her so hard that they blew a hole in her right lung. I was starting to get numb. I was so scared again. They got the chest tube in with few complications. Saige just didn’t want to be messed with. That actually became somewhat of a joke between me and the staff. Saige was always, for the most part, fine until someone “messed with her”. I used to say, just like her mother.
The rest of the day Saturday and then on Sunday, were hard. She was up and down all night and the next day. By Sunday night, they decided that there was nothing else they could do for her. They had given her every medication possible and nothing would keep her stable for long. What was I supposed to do? Her wonderful doctor, Dr. Nitu, then decided that she wanted to try her on steroids. She said that if they would have had the chance to do the biopsy, this was one thing they would have probably put her on anyway, so why not try it now. She said it couldn’t hurt. And, she was right. Within an hour after her first dose, she was stable.
Then, they came to me with the idea that they need to do the lung biopsy now. They didn’t want to wait. They didn’t think she could make it too much longer and they knew that only a biopsy was going to give them any information into what was wrong with her. It was so hard to make the decision to do that because they warned me that she could die during the operation. As scared as I was, I had to let them. I then decided to put Saige’s life, 100%, in God’s hands. It was the weirdest thing, but as soon as I gave God the control, I was fine. I knew in my heart that she was going to come out of the surgery fine. I didn’t even cry when I left her room. I was fine the whole two hours she was gone. The doc came to the waiting room to tell me she came through it. I hugged him and told him thank you, but I knew she was going to be fine. He just smiled.
Well, as soon as she got back to her room, the problems started again. They couldn’t keep her oxygen level up. About three hours after she came out of surgery, another doctor came to me to tell me that he wanted to put her on the ECMO machine. ECMO is Extracorporeal Membrane Oxygenation, which is a heart and lung bypass machine. It gave her lungs and heart a break from having to do any work. Another, oh so scary, decision to make, but an easier one then the biopsy. The doctor told me that if I didn’t agree to put her on ECMO, she probably wouldn’t live another 2 hours. That was all I needed to hear. I couldn’t just sit there and watch her die. Her life was still in God’s hands and if it was her time to go, then at least I knew I did everything I could for her. When I left her room, right before they put her on the ECMO, her oxygen sats were in the 50’s…she was purple.
I wasn’t as calm this time, but still not as bad as I would think. Again, she came through. What a fighter Saige was. [/color]
Saige’s biopsy results back the next day and her Doctor came in the room, so excited. She informed me that Saige was diagnosed with PPHN(Persistent Pulmonary Hypertension of the Newborn), which was curable. I just couldn’t believe it. I have never wanted to scream for joy, so loud, in my life. I almsot knocked Dr. Nitu over, jumping up to hug her. She stayed on the ECMO machine for 6 days. That whole week was wonderful. All I could do was think about all the things that I was going to get to do with my baby, that for a short time, I didn’t think possible. I started keeping a journal. I wanted to have everything written down, so when Saige got older, I could show her how strong she was and all the nasty things she fought through. She did so well. The day they took her off the ECMO machine, her lungs pressures had gone down into the 40’s…they had actually gone over 130, which is very bad. She had to have felt like she was suffocating. Poor baby.
Then, the day after she came off of the ECMO machine, Dr. Nitu came in with this horrid look on her face. She proceded to tell me that Saige’s initial biopsy results were wrong. She doesn’t have PPHN, she has ACD(Alveolar Capillary Dysplasia). But, this one isn’t curable. I stared at her with the most intense feeling of numbness that I’ve ever experienced. How could that be? How could they have been wrong about something like this?
I decided to do some reading on ACD and found out that it is a so very rare lung disease. As of now, there are only 116 diagnosed cases in the ENTIRE WORLD. How is this possible? Why my baby? What are the chances? All the questions going through my head. They aren’t positive, but they belive that her disease is genetic. She had a 25% chance of recieving both abnormal genes from both her father and I, and she did. I felt so guilty.
Here, I went a week beliving that she was going to be fine, and then get smacked in the face with this news. I wanted to hit something. I just kept telling myself and the doctors that God was going to work a miracle. Saige was going to be fine. God brought her this far. He’s not going to take her away from me now. I felt that way until the day she passed away.
Almost 2 weeks after she had come off of the ECMO machine, she started having problems. Two days before she passed away, her lung pressures were over 100 and the day she passed, her pressures were over 125. I knew that there was nothing else I could do for her…except to stop her suffering. It was another hard decision, but one I knew I had to make, if I love my baby as much as I knew I did. It was again in God’s hands and knew that is she was meant to live, he would bring her through this too. At 9:30pm on Monday February 14th, 2005, they took Saige off of her ventilator. 20 minutes later, she passed away in my arms. I was lucky enough to have close friends and family there with me, but nothing could ease the pain I was feeling. I will always love my precious Saige and know that someday I will see her in Heaven. Without tubes and the happy baby she should have been here on earth.
Added: November 7, 2007
Name: Nancy Lalicon
Our child’s name: Joneyo Glasgow
The date our child was born: July 9, 2004
The date we lost our child: July 21, 2004
The hospital where our child was treated: Women’s College, Toronto & Sick Kids Hospital Toronto
The physicians who treated our child: ?
Our story: It’s heartbreaking while at the same time comforting to connect with all these stories of babies and families affected by ACD. It has been 4 weeks now that Joneyo (Jo-jo) passed away. He was my first. He was born healthy, 8 lbs, 6 oz. I had one miscarriage at 12 wks, but was very grateful when I became pregnant again after 6 months. This pregnancy was uneventful except for at week 38 Jojo decided to turn breech after being in position at week 36. We decided to have a ceasarean. He came out and was beautiful. He had inquisitive eyes and a loud, forceful cry . He seemed so alert and looked at his mom and dad when we spoke with him. That first night he seemed fine except for a few things. My sister, who stayed with me that night, was up for most of the night as he seemed aggitated and wailed at times. Since he was weezy I was concerned so we brought it up with the nurses. They gave him salene drops. He often snorted which was we found amusing (which I don’t find now since this might have been a sign that something was not right). He also seemed hungry, but when I brought him to the breast it was difficult for him to feed. I thought it was because we were both new at this. There were times when he did calm down and we were able to sleep. The following morning when the pediatrician came around he noticed that Jojo’s heart seemed distant and that he looked ‘dusky’. They checked his oxygen levels and they were low. They took him down to the NICU. After a few hours we were able to go down to see him. He was given oxygen, and was being monitored. I remember he was given a pacifier which helped him calm down as he didn’t like all the wires and tubes. I remember being concerned about the pacifier because I didn’t want him to use one until he was much older. When I said hello he wailed and my heart just melted. This is when the roller-coaster ride began and time became warped. They all said they think he’ll pull through. He’s a big baby and most big babies pull through. I was worried, but was confident that he was in good hands and that we would be back with me soon. The next day (or was it that evening?) I broke down when I saw a cardiologist examining him. We were told that as long as there is no problem with the architecture of his lungs or heart he would pull through. The next day (or later that evening?) he was given nitric oxide, oxygen, morphine, a muscle relaxer and a blood pressure medication. I’m sure he was on other medication which I can’t remember of right now. Those pre- and post- numbers which became so important to us were constantly going up and down. At times it looked like he would pull through, but then he would crash, and not come right up to where he was. It was only one time on day two when he seemed like he was doing fine – oxygen levels were stabailizing, they reduced the nitric oxide, and even took him off the muscle relaxler. This is the last time that I was able to see his eyes wide open and see him move his arms around. On day four the doctors told us that they were making preparations to send him to Sick Kids Hospital which was just down the street. He was so sick and frail by this time, they didn’t know if he would make it through the transfer. Miraculously he did. And he did well. He was at Sick Kids on day 6. At Sick Kids he didn’t do any better. They talked about a lung biopsy to confirm a diagnosis of ACD, but they wanted to wait and see if he would get a little stronger. But when he would crash he couldn’t get back up to the same level as before. Finally on day 11, Tuesday, they decided they were going to do the biopsy, but it would have to be done in the NICU unit. Any movement would bring his oxygen levels down and send him crashing. Although we were warned of the possibility of death we decided it was better to know for sure that he had ACD in case we had to make a very difficult decision. On the day of the biopsy, Wednesday, they informed us that they didn’t think he would make it through the biopsy based on his condition over the last 24 hrs. We still had a choice on the biopsy, but they were very confident that he had ACD which is fatal. When we asked for their honest opinion on the next course of action if we didn’t do the biopsy, they suggested to let nature take it’s course. It was a hard decision to make. I had seen with my own eyes how weak and worse my little baby was and I couldn’t bare to lose him on an operating table. If he was going to pass I wanted to hold him, and touch him and let him know how much I loved him. I wanted him to go with dignity, not attached to tubes and wires. He was only 13 days old. He deserved the best care I and his community could give him. We had him baptised with all my family around him. I asked for him to be taken off the muscle relaxer to give him a chance to open his eyes and move his arms and legs. He open his eyes a little bit. He passed after an hour off the ventilator. We recently received confirmation that he had ACD. This is a cruel disease. I still haven’t come to terms of why this happened to him, to me, and to us. We want to have another child eventually, but don’t know when. If others had successful experiences with their babies after this cruel experience please let me know. What steps did you take to prepare for the next baby? I will always love Jojo and miss him so so much. I am grateful to at least have met him and to mother him for a little while.
Added: Date unknown – prior website entry
Name: Brian&Leslie Palumbo
Our child’s name: Cheyenne Taylor Palumbo
The date our child was born: AUG.12 ,2003
The date we lost our child: FEB.28,2004
The hospital where our child was treated: Columbia University,Newyork
The physicians who treated our child: DR.Robin Barst/Berman
Our story: Cheyenne was born 8lb,14oz with no immediate complications. I had a normal pregnancy&delivered by c-section.at our 1&1/2wk check up, I explained she wanted to constantly sleep& was not nursing like she should. DR said she was well hydrated yet had sounds of a heart murmur,&made a cardiology apt at Hartford Medical Center in 4 days.at that apt I explained how she turned blue that AM. When bathing her & vomited after a feeding. They checked her O2 level & ran with her through the halls saying she was very sick & might not make it.they did a catherization,intubated her,& DX. Her with PPH .after 2 days they sent us to New York where she was paraylized,placed on nitric,sedated.@2 months she was put on Flolan & they did a lung biopsy we got the results 3 wks later she had ACD.we decided against ECMO and believed with all our hearts that God was going to heal her.she began to improve even with many infections.@4months she got a trach&g-tube& finally off nitric.she would wake up often & look towards where I slept.we were transfered 20 min.from our house to Yale Newhaven in the rhab. So I could finish learning to take care of her & bring her home.each day her sats started to drop, they gave more Viagra,increased Flolan you name it she was on it.one day she coded & pulled through ,she was back on nitric & in the PICU.a couple wks. Went by & I went home that wknd. To be with our 5 yr.old daughter & have her birthday party.as I walked in our house after the party ,Brian called & said for me to get to Yale fast.as I walked in I saw her O2 was @0 and she coded again.she pulled through untill late that night her heart just could not take it any longer.she was 6 months & 16 days old when she went to be with Jesus.I still cannot believe she is gone.last week she would have been 1yrs.old. I kept telling everyone God gave me a miracle she would survive this disease,after reading all of these other stories I believe God gave me a miracle ,every day I had her here.up untill 2 days ago I thought my daughter was one of 11 in the world to suffer from this disease.and we planned on trying to have another baby.now I found this web sight & it says it might be hereditary, I dont know if I have the faith to believe it wont happen again. I am 38 yrs.old & years not much time to wait.I am thankful for having Dakota ,she is healthy.if anyone has any info on having other healthy children after a loss,please let me know.we will always have a baby(ies) waiting for us in heaven.my heart is broken & now i know it is one of many out there god bless all of those who share this kind of grief.
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Name: Dawn McCullough
Our child’s name: Erin Colleen
The date our child was born: 4-18-02
The date we lost our child: 5-01-02
The hospital where our child was treated: Childrens Hospital Columbus
The physicians who treated our child:
Our story: It has been almost 2 years since we lost Erin, but today it seems like it was yesterday. For the first few months after losing her, I was very active in reading and receiving newsletters and info from the ACD association. Then I just stopped. For some reason I didn’t want to follow it any more. Now I am here feeling like I abandoned my little girl and I feel like I should have been doing more for the disease that claimed her life. I don’t konw what to do now, but I want to do something. People keep telling me that I need to let go, not forget her, but just let go. I don’t want to let go yet…she is still my little girl.
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Our child’s name: Megan
The date our child was born: 1999
The date we lost our child:
The hospital where our child was treated: Royal Children’s Hospital , Melbourne , Australia
The physicians who treated our child: Dr Tibballs
Our story: The story of our daughter Megan is chillingly similar to many I have read here. Born following a uncomplicated pregancy, and delivery at term, she “declared” herself unwell at about 6 hours post-delivery and the roller coaster began-transfer to a paediatric ICU, nitric oxide, oscillating ventilation and ECMO(initially with a diagnosis of Pulmonary Hypertension of the Newborn).She, of course, ‘survived’ on the ECMO for 6 days, and then when this was withdrawn, she died with her family around a few hours later. Her diagnosis was made by lung biopsy after her death. The staff in the ICU had been thinking by the time of her death that this could have been the cause of her illness. But our Paediatrician had never heard of the condition. We had a 3 year old daughter at the time of Megan’s death. And we bravely got pregnant again 3 months after and in July 2000 were very relieved to have a healthy son. At the time we were told that ACD may be genetic, but not enough was known about it. So like many, we went into the pregancy just hoping that it would not happen again. Sometimes I would like another child, but I am too frightened to be honest. I would love to see more research done to find the cause. I suppose now I am concerned for my unaffected children and whether they could pass on the condition. I last looked at this website a year or so ago, and would like to congratulate those responsible for its progress and especially those involved in the research. It is very encouraging to see.
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Name: Natalie Negri
Our child’s name: Jett David Negri
The date our child was born: 20 January 2004
The date we lost our child: 03 February 2004
The hospital where our child was treated: Royal Children’s Hospital – Melbourne, Australia
The physicians who treated our child: Dr J Tibballs, Dr Rod Hunt
Our story: At this stage I can only say that we lost our beautiful boy to a diesase that I never imagined could exist. Being told that it is fatal is still like a bad dream. I know that Jett is resting in peace now, and that without ecmo we would not have had him for two heart wrenching weeks that we did. I love him, miss him and wonder how in today’s society we cannot do anything for such a condition. I hope that by contacting the ACDA I can contribute to the research and share my story with other suffering parents.
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Name: Marie Little
Our child’s name: Kaylie Jeane Little
The date our child was born: 8/25/1999
The date we lost our child: 9/3/1999
The hospital where our child was treated: Egleston
The physicians who treated our child: Dr. Chapman
Our story: I was fifteen when I found out I was pregnant. Confused and scared at first, I soon became happy. I was surrounded with love and support from all my family. Everything was going great. I was doing everything I should have done. However, I stayed very sick throughout my pregnancy and I didn’t gain much weight. Then the day I found out I was having a girl, I also found out that my baby would need surgery when she was born. She had a blockage in her bowels. I went into premature labor at 4 months but it was stopped. I went into labor again at 6 1/2 months and it couldn’t be stopped. At this time I just turned 16. Then on 8/25 with very little pain, I had a 4 pound 6 ounce beautiful baby girl. She immediately quit breathing. I didn’t even get to hold her. The doctors came back in and told me they were transferring her to another hopital but that I couldn’t go. Of course I left and made it to the children’s hospital before she did. She was on a ventilator and tubes everywhere. I didn’t even get to see her move because they had her on anesthesia. My mother and I stayed in the waiting room for the 9 days that she lived. Each day was like a roller coaster. One minute she was doing great- the next she was getting worse. We were blessed to have visitors everyday who came and gave their love and a shoulder to lean on. I recorded a tape of me reading children’s books to her. The nurses played them over and over. She seemed to get better by hearing my voice constantly even though I couldn’t be with her all the time. The doctors told me that she might have ACD because of the ups and downs and no interventions were helping for too long. On 9/2, I sat down and prayed like I had done each moment I had. This time instead of praying for her to get better, I prayed that God would give me a sign. I didn’t want to see my daughter suffer and struggle for her life. I felt selfish by keeping her here to deal with tubes and medication and a ventilator. The next morning, I walked in and found my sign. My daughter was blue. I knew that it was time to let her go. So my family and I gathered in a small private room. My mother held her as the machines came off. It was too unbearable for me to do. She went to Heaven in a matter of seconds. Afterwards, everyone left and I remained in the room with her. I got to hold her for the first time. I even changed her diaper and gave her a bath. I got to be mommy. I stayed in the room for hours just holding her. The last outfit she had on was a pink dress with bunnies that I put on her. That night, I went home for the first time since I had her. I sat on the porch swing alone. I saw a little baby bunny come from out of nowhere. It looked at me and then hopped across the yard and disappeared behind some bushes. A feeling of peace came over me. I knew that it was Kaylie saying she as wonderful and that she loved me. She is my angel, my miracle. She touched so many people’s lives in her short time. She had a purpose and it was fulfilled. She gives me hope everyday that life is precious and that I have a beautiful place to come to when I die. I think of her everyday. I even talk to her. I know that one day I will spend the rest of eternity with her. After her death, it was confirmed that she had ACD. I blamed myself. I thought I did something wrong. After researching the diagnosis, I learned that I didn’t do anything. I hope to help aid in the research for a cure. I am now planning to get married and soon have another baby. I will definitely do more research before I get pregnant to understand my risk of this happening again. It was definitely the hardest thing I’ll ever have to do- losing a child at 16 was the worst thing. I would give anything to have her back. In some ways, I feel that Kaylie will come back to me through another baby. No baby will take her place but I feel she will be part of that baby. I love you Kaylie! -Mommy
Added: Date unknown – prior website entry