Name: Angela Riley
Our child’s name: Ava Grace
The date our child was born: 3/2/11
The date we lost our child: 3/12/11
The hospital where our child was treated: Texas Children\’s Hospital
The physicians who treated our child: Multiple Doctors
Our story: Our baby Ava was born in Methodist Hospital a term baby via C-section at 2 in the afternoon. She was chunky and pink when she was born with no apparent health issues. She was 8 lbs 14 oz and slightly hypoglycemic as is the case with many big babies at birth. They gave her a little glucose and she perked right up. She was a normal little baby when they brought her to us in the room a couple hours later. My husband, myself, my daughter, mother-in-law and best friend all passed her around and took pictures that evening. I nursed her a bit and everyone headed home to return in the morning. I am an ER nurse and I noticed she was a little dusky but the lights were dim and I didn’t notice any other signs of respiratory distress other than she was a little lethargic. I took the pulse ox off my finger and popped it on her toe. It read 100% and the pulse was correlating with her apical pulse. I was worried she might be hypoglycemic again so I called the nurse in the nursery to see if they might check her sugar again. When the nurse came to get her she brought her into the bright light and I saw the instant look of concern on her face as she rushed Ava back to the nursery. I was in my room feeling helpless as the spinal was still in effect and I still could not move the lower half of my body. The next thing I know is that the nurse practicioner is in my room telling me that Ava’s sats were below 50 and they did not know why. They had her on oxygen and were transporting her to Texas Children’s Hospital right next door. My heart dropped and I immediatly called my best friend and husband and told them to turn around and come back and to go to Texas Children’s to be with Ava. They worked on Ava all night and it just seemed like one thing went wrong after another. As I sat helpless in my bed with my husband calling me to update me on what was going one each call seemed worse than the last. First she was placed on a ventilator, then she had a pneumothorax, then a chest tube, then they were unable to cannulate her two vessel cord so they finally got a PICC line in. Then she was on dopamine. I sobbed as I know what it means when all these things are happening to babies we work on in the ER. They are dying. She seemed to stabilize for a couple hours and my friend, also an ER nurse decided to leave my husband with Ava and head to work. No sooner than she left my husband called me frantically, Ava was crashing again and they wanted to put her on ECMO. Of course we agreed. What else could we do, she was going to die without it. She remained on ECMO and was stable but her pulmonary hypertension did not turn around like they thought it would. Finally, a couple days later than what they though Ava began to do better. Her chest x-ray cleared up and she passed her trial off ECMO so they decided to take her off of it. She did good the 1st day off and was so alert, opening her eyes and looking at us, tracking her doll when we held it in front of her and squeezing her Daddy’s finger so tightly and with such strength. We could not only see but feel her strong spirit. For the next few days we watched and waited but she just never got better. The last day of her life her sats just continued to drop further and further down. We signed a DNR. She had been through so much already and stayed by her side. That night after hours of sats in the 50’s we decided to take her off the ventilator and end her suffering. She breathed her last breath in my arms as her Daddy sang to her. They diagnosed here post mortem with a lung biopsy with ACD. And that is the short story of the life of our sweet baby Ava.

Added: April 8, 2011

Name: Simon and Amelia Ashwell
Our child’s name: David Fazlollah Upeksa
The date our child was born: 4th March 2011
The date we lost our child: 19th March 2011
The hospital where our child was treated: The James Cook University Hospital, Middlesbrough and The Freeman Hospital, Newcastle upon Tyne, UK
The physicians who treated our child: Jonathon Wiley (JCUH), Jane Cassidy and Lee Ferguson (FRH)
Our story: David, our first child, was born as a normal delivery at term
without any know complications (3.6kg/ 7lbs14oz). His Apgar score was 9 at 1 and 5 minutes. He had no problems in the first 24h, passing his baby check the morning after his birth with oxygen saturations (Sa02) of 98%. We all left hospital approx. 24 h after delivery and David was mostly asleep that day, not interested in feeding much but we didn’t think much of it. He woke up as soon as we turned off the lights on his first night at home and had what I would assume to be a fairly normal 2nd night for a newborn with some crying and a little feeding, but lots of falling asleep on mum’s chest, where he loved to be. In the middle of the night however, he woke with a loud, violent and inconsolable cry, which was unusual for him, and wouldn’t feed. He then started grunting, which concerned us a little, but we thought we were just being anxious new parents. The grunting settled after 5-10 min and he fell asleep again. The following morning, the midwife came to visit us and we were trying to get him to feed well when he started the same violent crying following by grunting. The midwife was concerned and arranged for David to be assessed immediately by the paediatric team at The James Cook University Hospital, Middlesbrough (JCUH). Of course, as soon as we arrived there he had settled, though the grunting lasted around 40-50 minutes this time. His Sa0¬2 were initially around 50% but he didn’t look cyanosed (blue) and they soon came up to mid 90’s spontaneously and the early low reading were put down to cold hands and feet. The admitting paediatrician examined what seemed to be an essentially normal 2 day old baby by this stage and, while finding no significant abnormality suggested a few hours of observation. This turned out to be a good idea as 2-3 hours after his admission he had another violent cry and then became cyanosed. His Sa02 were in the mid 50’s and didn’t pick up with 100% O2. It was at this stage where I realised (as a physican) that there was something seriously wrong with David and the nightmare rollercoaster described by some many unfortunate parents before us began . He was whisked to the resus room and then PICU and started on Prostacyclin infusion as the team thought he had congenital heart disease with right-left shunting. He was intubated, ventilated, arterial and central lines were placed and he was transferred to The Freeman Hospital Newcastle for an echo and paediatric cardiology assessment. We were so relieved when he arrived safely and were then told that there was nothing wrong with his heart. We were told he had persistent pulmonary hypertension of the newborn (PPHN) and that it would resolve spontaneously in a few days with Nitric. The PICU Consultant (Lee Ferguson) told that there were other causes of this type of problem but that they were so remarkably rare that we needn’t worry about them. David stabilised on Nitric he was transferred back to JCUH the following night. We were so pleased that he was coming closer to home and would soon be cured. However, the rollercoaster was only just setting off. The next day Jonathon Wiley at JCUH was concerned about David’s pulmonary artery pressures which didn’t seem to be coming down and his blood pressure and oxygenation was difficult to control. We had that awful conversation that so many people on this site have had of being told he may have an untreated underlying condition. We were devastated. David was transferred back up to The Freeman Hospital for consideration of ECMO. For a 5th night in a row we were up all night as he was transferred back up to Newcastle. But again our anxieties were relieved to some extent when Jane Cassidy on PICU stabilised David with some suction and surfactant and his Sa02 was miraculously 100% again. Our optimism declined over the next 2 days as he became unstable with frequent dips on Sa02 despite being on, by now,adrenaline, prostin, sildenafil, nitric, in addition to the sedation and paralysing drugs. In view of this he was put onto venous-venous ECMO, with our hopes at a low. However, this allowed us to hold him, see him looking stable, avoid anxious monitor-watching and go home for some sleep. His pulmonary artery pressures dropped and we thought that at last he was on the road to recovery. He came of ECMO easily, but again became unstable with high oxygen and nitric requirements. He thus had a chest CT scan which showed some non-specific ground glass changes, and then went on to have a lung biopsy. The night after the lung biopsy we hit rock bottom when he again had a severe dip in Sa02 and had to have ECMO restarted while we awaited the biopsy result. The surgeon who put in the ECMO cannulae (V-A this time) told us he had only needed to reinsert ECMO cannualae 6 times and none of the children had survived. The following day (24h after the biopsy) Jane Cassidy told us the news we had been dreading,that the lung biopsy had confirmed that David had ACD. She offered us the option of considering lung transplantation but after a long and difficult discussion we decided it was not in David?s best interests to do so. The following day, David?s ECMO cannulae were removed, he was extubated and my wife and I held our beautiful 15 day-old son in our arms, as we?d been aching to do for so long, but this time it was as he died.We are of course desperate to have other children but in addition to grieving David?s loss we are anxious about the possibility of them being affected. David had blood taken for genetic analysis and we are waiting to see a geneticist. So far, however, the lack of information about the risk to future children is difficult for us to deal with. We would like to thank everyone who has posted their stories on this site. Reading them has helped us a great deal. Thanks also to those who set this up ?we hope that as a physician and academic researcher we may be able to help soon. And to the JCUH and FRH medical and nursing teams who looked after David- his care was faultless.

Added: April 6, 2011

Name: Amanda Seamons
Our child’s name: Kailie Marie
The date our child was born: November 26, 2010
The date we lost our child: December 16, 2010
The hospital where our child was treated: Primary Childrens
The physicians who treated our child: Nolan
Our story: My boyfriend previously posted for our daughter. We found out the results of her lung biopsy this morning. She did have ACD. She would be 8 weeks old today.In a way the results have given me closure, but know I don’t know about the future. What are the chances of this happening to us again? I love my angel baby.

Added: February 11, 2011

Name: Dawn & Kenneth Earle
Our child’s name: Ellis
The date our child was born: 27,09.2009
The date we lost our child: 19.10.2009
The hospital where our child was treated: South Tyneside General Hospital
The physicians who treated our child: Dr Ockabenny
Our story: Ellis was born 2 weeks over due, following a trouble free pregnancy. He was a georgous little boy who spread so much joy through his family. The midwifes and the health visitors were pleased with his progress, putting on a good amount of weight with being a breastfed baby. He started to become unwell at 17 days, refusing his feeds and generally not settling as he previously did. We went through a very sleepless night, with Ellis only taking very little feed and his nappys were becoming dryer which concerned us greatly. In the morning our nightmare began, Ellis started to go blue and fight for his breath, we immediately called the local A&E who despatched a paramedic immediately. On his arrival he immediately gave Ellis oxygen which brought his colour back but he was still fighting for his breath. Ellis was rushed into hospital A & E department, xrays were taken along with bloods, they were unable to give him oxygen straight away as equipment was defunct or had been mislaid so one of his doctors ran with him immediately to the Childrens ward where they put him in a oxygen box. They needed to take a spinal fluid sample so we were taken an put in a side room, they said they needed to rule our meningitus, this came back negitative. They eventually made Ellis more comfortable and transferred him onto the childrens ward. They swapped machines back and forward all day, his stats went up and down, eventually he settled and his breathing started to become more normal but doctors were still not happy with his progress and decided to put him on a machine that would force more air into his lungs. He was only on the machine for a few minutes when he stopped breathing altogether. Doctors and nurses worked two hours to try and bring him back but were unsucessful, he died in our arms with his grandma at his side. Many of his family came to the hospital to help us say goodbye. Six months after Ellis’s passing we received his post mortum results from his consultant, he advised that Ellis had ACD, a little known condition in which he has had to research. Many people came to say goodbye to Ellis and nearly £2000 was raised to hospital unit where he was treated. We miss our little boy every moment of every day, love you Ellis, Mammy & Daddy xx

Added: January 8, 2011

Name: Steven Bearden
Our child’s name: Kai Marie seamons- bearden
The date our child was born: 11-26-2010
The date we lost our child: 12-16-2010
The hospital where our child was treated: Primary Childrens medical center NICU slc UT
The physicians who treated our child: brook( fellow) and all the top NICU docs
Our story: little Kai was born around 5:30 on 11-26-2010 she was taken from her mommy earlie because they thought she wasn’t growing and apered to be under weight. She was born vaginaly weighing 5.5 lb ( aprox. 2400 kilos) birth went great and the NICU was on standby due to concerns of underweight. well she came out WeIghing more then anticipated, NICU was let off standby at that point, one of the nurses noticed a slight heart rhythm drop for a few minutes. Kai was then taken to the nicu and realesed about 20 minutes later with all her stats back to normal and her heart was doing it’s job. It was so exiting that she was ok. Amanda and I were then transferred up to the newborn nursery area were we got a room and our Babie was there trying to breastfeed. she wasent very interested and by that time, kai had gone to the nursery to get a bath. We got her back and tried to breastfeed again one more time before we attempted to sleep. Kaia nurse came in to routinely check her and Kai was a little on the cold side so she went back to the nursery to get warmed up, at about midnight Amanda felt like something was wrong with Kai, she went and checked on her in the nursurey and immediately raised a concern, Kai looke purple/blue. They put her on the spo2 and her saturation was at 70. Kai then was back in the NICU. She responded well to mild doses of oxygen and a tiny bit of nitric oxide, they thought she had pneumonia and very mild and limited pulmonary hypertension, ( she was rapidly developing severe polmenary hypertension and her stats weren’t stable for long, the had to keep going up on ventilation therapy and nitric and oxygen. She coded several times and was getting chest comparative at least 4 different times, then ECMO was introduced to us and that she needed to go to primary Childrens asap. Kai and I went there in a ambulance and once we got there she stabilized and ECMO was not started, the next day her stats took another nose dive and ECMO was givin, when installing the ECMO setup the machine malfunctioned and had to wait for another machine to be set up. They got done installing the canualsvand the Venus I believe had came loose or positioned incorrectly so the ECMO was pumping in more blood then pulling out, our little Kai filled to her max and looked like a little sumo Babie before the problem was corrected. Then her bodie started to blister from all that fluid. It was so hard to see her like that and the doctors had already told us that the outlook wasn’t looking very good. Little Kai faught and faught. She started to do a 180 and got most of her blisters healed and most of her fluid out. Still on ECMO the system started getting very fiberouse and clots were forming. The changed the circuit on the ECMO machine and she kept her stats up were they needed to be. A day and a half after the circuit change, it started getting very fiborus and a large clot was detected ( they were able to get the large clot out sucessfully, 2 days later she was able to come off ECMO completely and her stats were exelent, her oxygen and nitric and all her meds were being weined down and she was doing great, at that point we were so exited that our Babie was actually going to come home one day! She got off of ECMO on 12-8-2010. ( a total of 9 days on ECMO) she was our little warrior princess and a real fighter. She was stable and down on alote of therapy for 3-4 days and Amanda and I were actually sleeping back at home and not so confined to the NICU. That didn’t last long and she again begun to drop stats and needed to go back up on her therapy and reached maximum therapy very quickly, they really didn’t have to many answers other then the pulmonary hypertension was back with vengeance. Also maybe some sort of an infection but all cultures came back negative. The then talked to us about acd a little mOre and with a little more depth. And the FICA said that she fits the description but would need a lung biopsy to confirm. Our little warrior was starting to fill back up with fluid because her blood pressure loved the volume, they needed to get her on lasiks to get the extra fluid off, yesterday they attempted a new i v. Even though she was on morphine and paralytics the second they tried sticking her she began to crash. That was early in the morning I watched her stats roller coaster while her mommy was pumping breast milk. Kai was filling back up and when they were able to give lassies in the past few days she didn’t really respond. The doctors asked if they could take a small non invasive way to get part of her lungs to get it tested for cad. amanda and I then decided( with the doctors help and advice) that we couldn’t let Babie Kai fill back up on fluids and crash if they tried to take some lung. We had a planned removal of therapy for 9 am on 12-17-2010 and was getting everything in order that we needed too. Within 2 hours of deciding that kai’s stats begun to roller coaster again with her oxygen levels never reaching above 95 for over a split second her saturations were hanging from 70-85 for 4 days now. We decided we had better hurry so we get a chance to control her removal and removed her from all therapy on 12-16-2010 and she passed away at around 7 30 pm. We are very saddened from this outcome but comfortable with our decision because my little Kai angel was suffering spiritually. Her will to live was the most amazing thing I have ever experienced on my life along with many many others her spirit touched. After she passed we allowed them to take parts of her lung and intestine so we could know if she had acd or not. if she doesn’t have it then the acd foundation will stil get our support. We are very thankful for your website and the information we have learned from it so far. It helps to know were not alone out here. With love, angel kai, jayleb her big brother. Amanda, and steve.

Added: December 17, 2010

Name: Luana
Our child’s name: Isaiah Anthony
The date our child was born: July 25, 2010
The date we lost our child: July 30, 2010
The hospital where our child was treated: Sick Kids Hospital
The physicians who treated our child: Dr. Sivarajan
Our story: Isaiah Anthony was born on Sunday July 25th, 2010 at approximately 2:30pm. He was 8 pounds and 4 ounces. Isaiah was going to have to fight no matter what. Isaiah was diagnosed with a minor heart defect and enlarged kidneys in the uterus. We were advised that each was treatable. My wife and I faced some difficult decisions at this point. After careful reflection and with the guidance of Isaiah’s grandparents, we decided to give our son every possible chance at life. Little did we know that these difficult decisions would be just the beginning. After Isaiah’s birth, he appeared to be a healthy baby. However, within a few hours, he began to grow fussy. Nothing worked to calm Isaiah down and finally a nurse at Mount Sinai noticed something and decided to check his oxygen level. It was low and dropping by the second. Isaiah ended up being taken to the NICU at Sick Kids Hospital. In the NICU, the doctors tried everything for almost two days to get his oxygen levels up. Everything the doctors tried worked initially but became less effective as time went on. Isaiah’s oxygen level would inevitably begin it’s slow descent. Each rise and fall in his oxygen level was mirrored by a rise and fall in our hopes. After the doctors in the NICU had exhausted all medicinal options, we were given one final, risky, surgical option. We could either let our baby boy go or we could essentially place him on a life support machine. At this point, the doctors knew that the issue was with his lungs but had no diagnosis and therefore were only treating his symptoms rather than the cause. The life support was to stabilize Isaiah and give the doctors enough time to come up with a diagnosis. Even if the surgery itself was successful, there would still be ongoing life threatening risks associated with being on the machine and its accompanying medications. The decision to place Isaiah on this machine was another difficult one, but again we decided to give our son every chance at life. Once again and for the rest of Isaiah’s short life, our hearts were filled with an unbearable mixture of hope and fear.
Isaiah survived the surgery and was then transferred to the CCU at Sick Kids Hospital. He would spend the remainder of his life there. We were informed that in order to diagnose what was wrong with him, he would have to undergo another risky surgical procedure on Thursday morning. The doctors needed a lung biopsy in order to make a diagnosis. The doctors made it clear that this was their last option and depending on the results, there may be some more difficult decisions to make. The doctors ensured that at least, preliminary results would be ready on Friday. If not we would have had to wait until the following Tuesday. Having to wait a day in this situation is bad enough, it would have been almost unbearable to have to wait four.
Once again Isaiah survived and after a few tense hours in the morning, my wife & I were able to spend one good day with our little one. For one day, we were able to put everything out of our minds and focus on Isaiah. We took turns touching, talking, reading and singing to him. The first story he heard was “Love You Forever” by Robert Munch. A poem from this book touched us and we put a variation of it on his plaque. It reads:
“We’ll love you forever, We’ll like you for always, As long as we’re living our baby boy you’ll be.”
Friday morning, we made our way back downtown and back to the CCU. After speaking to the doctor, we were informed that final results of the lung biopsy would be ready later in the afternoon. This was not good news. Previously, the doctors had explained that the faster the results came back, the worse the news was likely going to be. In spite of this, we spent the morning touching, talking and reading to Isaiah. Finally at 3:30pm the doctor came to see us and let us know that the final results were ready. The doctor informed us that Isaiah had an extremely rare and incurable lung disease. We were advised that there was no way to detect the disease while Isaiah was still in the womb. As a result, the life support machine was no longer prolonging his life. It was prolonging his death.
We made the decision to take Isaiah off life support that same day. Every care was taken to ensure that Isaiah wouldn’t suffer once he was removed from life support.

Before the machine was disconnected, my wife, surrounded by family, held Isaiah in her arms. During this time, a pastor gave a blessing and said a prayer. My wife continued to hold our baby boy and rocked him while the machine was turned off. Isaiah further showed his strength and will to live as he continued to breathe on his own for three more hours. We like to think that Isaiah wanted each of us to hold him one last time before he left.
On Friday July 30th at approximately 11:30pm, Isaiah passed away. He died in my arms, with his mother sitting next to me and surrounded by family. Isaiah started his new journey peacefully, quietly and forever with our love.
Finally, our baby boy could rest.

Added: October 4, 2010

Name: Angie Bleek & Clive Curnow
Our child’s name: Tommy Curnow
The date our child was born: May 3, ’06
The date we lost our child: May 24, ’06
The hospital where our child was treated: York Hill,Glasgow
The physicians who treated our child: Dr.Coutts & many others
Our story: I come to this site often to see if there has been a breakthrough or any answer as to why.I read these shocking experiences we’ve all had and usually have to go off for a little cry.Now I must get our story down.
It seems very similar to all the others.Great pregnancy,perfect birth,beautiful baby boy(9lb 3oz)hello Tommy.He completed our family,we already have a boy 3yrs old at the time.Tommy was very quiet and slept a lot,then the evening of his first day at home we had to call 999 he had very quickly started struggling to breathe.Our nightmare rollercoaster began.
Back in the hospital where he was born(Truro)they couldn’t do much so we were sent on to Bristol.He was on an oscillating ventilator two days,Dr said he needed ECMO.He ended up in Glasgow,no beds anywhere else,thank goodness for Ronald McDonald houses.The ECMO looked horrific but we had faith in the doctors,he was in the best place,they would fix Tommy.There were lots of ups and downs.I can’t go into detail or I’ll start crying again,you all know it was hellish.
For over two weeks Tommy was on ECMO the Docs crossing things off thier list of what was wrong,then it came to a lung biopsy and what we would have to do if they found what they suspected was wrong.The results came back,Tommy had ACD,they couldn’t fix him.We allowed them to turn off all the machines keeping him alive asap to stop his suffering anymore and he died in our arms.The pain of the grief is crushing and still sticks in my throat now.I think of him every day.I don’t like the phrase’time heals’but I think time can wrap a bandage around a broken heart…I need a really big bandage.
We did try again but I miscarried that baby at 12weeks.Thanks to this site and the directory of other families we had one last try.Our beautiful daughter was born Jan 6,’08,and is thriving,a force of nature and completely perfect.I love ALL my children so much,they are my world.

Added: September 29, 2010

Name: Ann and Adam
Our child’s name: Heath
The date our child was born: 5/19/10
The date we lost our child: 6/22/10
The hospital where our child was treated: Cincinnati Children’s Hospital
The physicians who treated our child: Dr. Russel Hirsch and too many others to mention
Our story: I had a fairly normal pregnancy. I had a elevated risk of Down’s syndrome on the quad screen, but normal ultrasounds so I declined any amnio. I did develop polyhydraminos with no apparent cause. With these, there was some anxiety for me, which seemed to be relieved at delivery. I was induced 1 week early due to the assumption that he would be over 9 lbs. Our Sweet Heath was born May 19th at 1:50 p.m. weighing 9lbs and measuring 21 1/2 inches. He was the easiest delivery of my 3. Shortly after delivery my OB told me she had found a knot in his cord. We thought we had avoided the unthinkable.

Things went well in the hospital. He nursed and slept great and we went home after the usual 48hrs. His big brother and sister loved on him so much and he never seemed to mind. He quickly eased into the flow of our family. We were so happy and truely felt our family was complete.

Tuesday June 14th we came home from a t-ball game. It had begun to rain so we had to get dried off before getting him out of his carseat to eat, so he cried for a minute. I thought he looked faintly discolored around his lips and was worried, but figured I was imagining things. It was gone the second he was picked up. After getting my other kids to bed I listened with my stethoscope (I’m a physician assistant)and thought I heard an innocent murmur. I took him to see his doctor the next day and he ordered an echocardiogram for the following day, Thursday, just to ease my mind…that is when our world fell apart.

The ultrasound tech said the right ventricle was enlarged and pressures were quite high, but was unsure of the cause. She sent the pictures stat down to Peyton Manning Hospital. After requesting further images, Dr. Kumaar requested to see Heath right away. After looking with another cardiologist for over an hour, he requested to admit him to the ICU. If a structural cause for pulmonary hypertension was not found, the situation did not look good.

He did well that afternoon and evening just on supplemental oxygen via nasal canula. I was able to nurse him until 4:30 Friday a.m. but he then had to be NPO for a chest CT. He tolerated that well until after the scan was performed. He then had what was assumed to be abdominal cramping from the Ketamine (sedative for the scan). He were in so much discomfort and I was unable to comfort him. He couldn’t nurse because his breathing was unstable and they wanted to keep him NPO. He couldn’t breathe well enough to take a pacifier. We were all so scared. The CT showed no structural abnormality. A trial of nitric oxide made no improvement and actually worsened things. By around 8 p.m. he was having so much difficulty breathing that he had to be intubated. Even though I knew the probable path we were heading, it was comforting to me not to see him struggle.

At this point we were looking at primary pulmonary hypertension and it was recommended for him to be transferred to Children’s Hospital of Cincinnati if there was any miracle to be had.

He was transferred on Saturday. We were able to hold him for at least a half hour prior to the transfer which we will so treasure. They sent the best team possible consisting of a cardiology fellow, 2 nurses and a respiratory therapist. He almost crashed just after leaving his room. After a scary start, the transport was thankfully uneventful and we settled into Cincinnati fine. Sunday was the day to rest. There were a lot of ups and downs. Monday, we met with the whole team in the a.m. and they recommended a cardiac cath and lung biopsy that day. He tolerated the procedures but just after returning went into cardiac arrest. We were retrieved from the waiting room to hold his hand while CPR was performed and he did return.

The cardiac cath didn’t show any repairable anatomy. We had to wait on the biopsy. Oxygen saturation continued to gradually diminish. After many signs that the situation was irreversible, at 2:30a.m. on June 22nd, 2010, we lovingly decided that he needed to be at peace. We were able to hold him and rock him as he took his final breaths to be with Jesus. Everyone tried so hard to help him, but couldn’t.

The next day we found out how truly special he was. The biopsy revealed alveolar capillary dysplasia. The pathologist called twice to verify his age.

Even though we miss him more than most people who haven’t experienced this kind of loss can imagine, we know that he is the lucky one…No more pain or suffering. He only knew love and now even more love. He was such a blessing to us in his short time with us. We are so grateful for the time we had.

You are our hero, sweet boy. You touched so many lives…of course ours the most. We love and miss you so much, Heath.

Added: August 2, 2010

Name: Jennifer Bruno
Our child’s name: Anessa Leigh
The date our child was born: 05/03/2005
The date we lost our child: 05/11/2005
The hospital where our child was treated: St. Louis Children’s Hospital
The physicians who treated our child: Dr. Harris
Our story: My beautiful baby girl was born from a pretty uneventful pregnancy, as most of yours were. She was full term and weighed 7pounds. She was so perfect but I had this awful feeling that something wasn’t right. Even though her doctors said she was perfectly healthy I didn’t feel the same, mother knows best I guess. Anessa was just like any normal baby the first 13 hrs of her life. I breast fed her, burped her and fed her again that night around 3 in the morning. She was so sweet with this perfectly round head and I remember the feeling I had when she fell asleep on my shoulder while I was burping her. Its like nothing I have ever felt before. I loved her so much! I just started praying to God that my feeling would go away. The next morning I wanted to cuddle with her so I laid her in bed with me. When the nurse came in to do my vitals she noticed she didn’t look right and took her to the nursery. The doctor came in around 30 min later stating that she had stopped breathing and they weren’t sure why. They said her SATs were back up, she was getting her color back, and would probably be fine but wanted to send her to Children’s Hospital just in case. He even said from the blood work they had done the night before they didn’t see this coming, she caught them with their pants down. I was in complete shock. My friend had had a baby with a lung condition right after birth that pulled through just fine so I thought for sure she would pull out of this. I remember going to see her in the nursery before the doctors got there. She was under the oxygen hood crying but the second I touched her she stopped. It warmed my heart that she needed me. I talked to her and she held my finger all the way to the helicopter. It was an hour and a half drive for me to get there and I was panicking the whole time not knowing what was going on. When I got to Children’s and found the Nurse Practitioner that flew with her I ran up to her and asked how she did. The glum look on her face said it all and she said my family and I should sit and wait to hear from the doctors. An hour later they came in and said it was Pulmonary Hypertension and that should would get worse before better. I didn’t get to see her again until 13hrs later when she was finally stable. Then however, I couldn’t touch her or talk to her because she was so unstable. I just sat there and looked at her and cried all night. The next day her SATs crashed again and this is when they placed her on ECMO. This was terrible but so great at the same time because now I could hold her and kiss her and tickle her feet and she responded to all of it. She did well for the first few days but then her chest tube ruptured an artery on her ribs and they had to do surgery. Since she was on so much heparin the bleeding just got worse until they were giving her 100cc an hour of blood. She was loosing it faster than they could keep up with. They made the decision to take her off of ECMO early and they didn’t think she would survive. We went in to tell her bye. She hadn’t opened her eyes since I last saw her before she got on the helicopter, but this time she opened her bright blue eyes and smiled at me. It crushed me. The surgery to take her off went much better than expected and pulled out strongly. They had high hopes, and so did we. She did great the first day she was off of it and they were talking about feeding her my milk the next day and coming up with a diet plan. Just as it all was getting better that very night her SATs crashed again and they were having a hard time keeping her stable. I fell asleep on my knees praying that night. The next morning the nurse told me that doctors needed to talk to me. They gave us the option of letting her go but I couldn’t make that decision just yet. They told us we should spend some time with her because they didn’t think she would make it through the day. A couple hours later, when I saw first hand that she wasn’t responding to CPR anymore I realized it was best to take away her suffering. They stopped all resuscitation and left her on the vent. About an hour later, when her heart rate reached 18 beats a min. they turned the vent off and she went to be with God. After she died we spent 3 hours just letting family who hadn’t had a chance hold her. I miss her so much and I thank God for those 8 days I got to spend with her. She was my little angel and there isn’t a day that goes by that I don’t think of her. She taught me so much about love in her short life that I will never forget.

Added: January 26, 2010

Name: Tara Harvell
Our child’s name: Alyssa Marie Felps
The date our child was born: November 29, 1999
The date we lost our child: January 6, 2000
The hospital where our child was treated: USA Women and Childrens(Mobile&Birmingham)
The physicians who treated our child: Dr. Ham
Our story: Our precious daughter, Alyssa, was born with ACD in 1999. It was very unexpected because I’m sure like alot of you, my pregnancy went very well and she seemed to be very healthy. I knew something was wrong the next morning after she was born when two doctors came to my room. They explained to me that they weren’t sure what was going on but reassured me that they were searching for an answer and trying to keep her very comfortable. I was devestated and everyone tried to tell me she would be ok. But a mother knows best. I had that aweful feeling that it was gonna be anything but ok. They tried several things to reverse the situation and when those things did not work, they sent her to Children’s hospital in Birmingham, Al, where she was hooked up to the ECMO maching. Those 2 weeks were probably the best, because we were actually able to hold her, which is the best feeling in the world! Unfortunately it did not last and after all the attempts to save her, she was really suffering. On January 6, 2000, We had to make the hardest decsion in life we’d ever have to make. We had to let her go to be with God. My baby was no longer going to suffer. She was the toughest little person I’ve ever had the pleasure of knowing. It’s been 9 1/2 years and there is not a day that goes by that I don’t think about her, thank God her, tell her I love her. I am thankful for what little time I had with her, and I pray that one day there will be a cure for this monster disease. To all the parents who have suffered, I feel your pain and we can all be happy knowing our little ones are with the Lord..They will never be forgotten!

Added: September 12, 2009