Name: Andrea & Paul Scurti
Our child’s name: Addison Grace Scurti
The date our child was born: 12/10/2006
The date we lost our child: 1/22/2007
The hospital where our child was treated: ACH St. Pete, Florida
The physicians who treated our child: many
Our story: A living nightmare pretty much sums it up. Our little dove lived for six painful weeks. She was so perfect. I still to this day wonder why. We think about her every day. We now have a little 16 month old miracle, Mollie. She was born 3 months early and presented signs of ACD. She had PPHN for 10 days and required a HFOV and NO, the doctors did not think she would make it. She is a healthy, full of life little girl. I can’t help but think that she has a part of her big sister’s spirit in her. So there is hope, even though we will probably not dare to try for another child.
Added: April 9, 2009
Name: Cheryl & Christopher
Our child’s name: Brandon Kenneth
The date our child was born: January 15th 2009
The date we lost our child: February 13th 2009
The hospital where our child was treated: Vermont & Boston Children’s Hospital
The physicians who treated our child: Dr. Pfister, Mercier, Van der velden, Spencer
Our story: Our story began like most others before us, it was our second child the missing piece to our family that we were eagerly awaiting. My pregnancy was pretty uneventful and quite easy until the last month. I was asked to have a fetal stress test done, where they monitor the heart rate for 15-20mins. At 36 weeks I sat there hooked up for more than an hour, I was then asked to go home and eat something then return. After doing so the heart rate seemed to respond and I was asked to return in 2 days. It was that day that the rollercoaster began. After 45mins of being monitored my midwife informed me that they didn’t see enough peeks to let it be and I would be induced today. My mind raced, I wasn’t ready we weren’t ready would everything be ok, would i end up with a c-section was my biggest fear. Which soon became reality. After only 2hrs I was brought in for an emergency c-section, all I could ask is he okay, we had a son!? I felt awful laying there helpless only to be informed in recovery that Brandon would need to be transferred that he is having some breathing issues. A team came after I saw him breifly and brought him an hour away to the NICU at Vermont Children’s.My husband stayed with him overnight as they proceeded to intubate and evaluate Brandon. I wasn’t able to visit as I was an hour away still. Yet on the third day I visited him for the first time my heart ached I never expected this. All I could do is cry and apologize to him over and over. We were told that they were checking for pneumonia, which we thought oh no, not knowing that pneumonia would’ve been cake compared to the following weeks. After ruling out infection and his platelet levels were no longer the issue we were given PPHN as the diagnosis.Which we were told that all they needed to do was dialate the blood vessels, and continued to assure us that this is common and treatable. After 2 days we walked into the Nicu to see Brandon on only room air and the canular, I was in my glory. I held him for hours and planned on nursing the next day I counted the days thinking he should be home in a week we can handle this. The whole time being away from our 2 yr old who was home missing us. On our way to see Brandon we were involved in what could’ve been a horrible car accident, I thought could it get any worse? Yet after two good days with Brandon looking great, he was back to square one with the ventilator. His platelets were up and no longer a concern however a simple infection was clearly not the case.The doctors then informed us that they would try NO, which he responded to immediately and did fine on. However, once they attempted to wean him off the desaturation began. They continued to do ultrasounds of his stomach, heart,and brain to rule out other things. After days of waiting they decided to try sedanifil or Viagra; this was their last effort. We were beside ourselves, what if this doesn’t work? The doctors began the Viagra treatments and attempted to wean Brandon off the ventilator with little success. Everyday was a nightmare we were afraid to even step into the NICU and worried to death what each phone call might bring. After 2 weeks Vermont Children’s had exhausted their efforts and arranged a transfer. As parents we stood there helpless and watched a Med-flight team take our son to Boston Children’s 5hrs away! We drove down the next day for the weeked only to talk to some really great doctors & nurses about Brandon’s future. They were able to stabilize Brandon and heavily sedated him, I couldn’t believe how many IV fluids there were, he had gone from 3 fluids to 10 and 12 in the end. The team had many ideas and set up a ct scan which showed nothing that would explain the condition. We were told about surfactant defficeincy and questions about our family history yet nothing gave an answer that we desperately wanted. We left and returned after a horrible week of phone calls only to be told that they were having trouble keeping Brandon alive. We flew down only to have a meeting to discuss the next step, Brandon wasn’t well enough for a lung biopsy and even so the only thing they could do is a transplant. However, the doctors saw no harm in doing a high dose steriod our last hope. We consented to the steriods and a cardiac cath the last week only to be told nothing was present that could explain the condition and it was clear that Brandon would not get better. We knew that we could not let Brandon lay there in the hospital only to suffer, we refused ECMO and made the long drive knowing we were going to say goodbye to our son. At 4lbs 8 1/2 oz my son is the strongest person I have ever met. We said goodbye without tubes and in peace in my arms with his father beside him and a nurse I will never forget. Brandon will be forever missed & never forgotten, and we hope to help prevent anyone from ever experiencing our pain in the search for an explaination & cure.
Added: March 2, 2009
Name: Humpherys, Randy and Wendy
Our child’s name: Laykin Shy Humpherys
The date our child was born: March 18, 2008
The date we lost our child: March 29, 2008
The hospital where our child was treated: St. Josephs Phoenix, Az
The physicians who treated our child: Dr. Guteirrez, Dr. Fortinov
Our story: Our first grandbaby!! We were so excited when we found out that Kara and Erik were expecting. They had been married for a couple of years and so much planning was rewarded with the news of the pregnancy, and we were even more excited that it was a baby girl as they are scarce in our family. Pregnancy went well, we were kept up to date w/photos and ultrasound pics, we discussed cures for morning sickness on the phone, talked about names, spoke of when I would fly to Las vegas to hold my littel angel. The day she was born, I received a photo on my cell phone that made leap w/joy, a txt message that she was here and healthy and happy and that Erik would call me soon. Then I noticed that in the picture, even tho she was pink and alert, she had moniter leads on. I am a neonatal RN and knew that this was not routine procedure w/a “normal” delivery. I waited for Erik to call, he did, things were great at first, tho she had not cried much after birth, ok I thought she is just a mellow kid, unlike her father. Not too much later I recieved a call that she had a spontaneous pneumothorax and would need a chest tube, ok I thought again, not all that uncommon, it would be ok. Meanwhile I was on my way to the Salt Lake City airport to catch a plane to Peru where I would be volunteering on a medical humanitarian mission. The morning I was in Atlanta on my way to South America, Erik called me to say that Laykin was on an oscillator and they thought she had severe PPHN and would have to have ECMO, and would have to be transported from Las Vegas to a center where they could do ECMO. I spoke w/the neo at Las vegas and he told me that she may not survive the flight. She did, and did well. I went on to Peru, keeping in touch w/Erik as freqently as I could. The first couple of days i was in Peru, Laykin did well, responded to treatment was awake and alert despite being intubated and sedated, she was beautiful and had such a fighting spirit. Over the course of the next few days, she did so well they were able to stop the ECMO, and she went to a conventional ventilator. However, the pneumos were still a problem, they could not keep the fluid off of her lung. I recieved a call from Erik, things were not going well. I then changed my flight and flew from S. America to Phoenix. When I got to Phoenix, my husband was also there. We spent the next several days at the Ronald Mcdonald house, going back and forth to the hospital. Laykin did well for a few hours, then would be critical. The morning she died, I had gotten up early and walked to the store for a few needed items, I got a call on my cell, Erik saying that they needed us at the hospital now. We got there, and they took us right to Laykins room. Several nurses and Dr. Fortinov were there, it looked grim. After hearing what had happened in ther early morning hours, seeing that Laykin could not fight anymore, we chose to discontinue life support and let her die peacefully in her mothers arms with her father and loved ones at their side. I remember being so overwhelmed, I will never forget the shock and hurt in my sons eyes when they told him that Laykin was dying. I hope that a cure can be found for the future children and peace of mind that all of us that have been thru this experience want. Our little “angel baby” we love you and will never forget the joy you brought us in your short 11 days of life.
Added: September 26, 2008
Our child’s name: Avery Mae
The date our child was born: March 17, 2006
The date we lost our child: April 3, 2006
The hospital where our child was treated: Hospital for Sick Children, Toronto
The physicians who treated our child: Dr. Cox, Dr. Langer and many others,
Our story: At 19 weeks gestation, I was told that my baby girl would be born with a birth defect called Congenital Diaphragmatic Hernia. This meant that her diaphragm had failed to properly close, allowing her stomach, bowel, intestines and liver to move up into her chest cavity and affect her lung growth.
I knew Avery would be in the hospital and require surgery. I knew she would be placed on a ventilator and maybe even ECMO if things got bad. Although I knew of the possibility of death as a result of CDH, I was hopeful. I did not think that there was no chance of her recovering.
It was only after Avery’s repair surgery, nitric oxide, mechanical and ocsillating ventilation, and the roller coaster ride that has been described by so many parents here before me, that ECMO was attempted as a last resort. Avery failed to improve, and by now had suffered irreversible brain damage.
Despite unwavering efforts by a competent and compassionate team of doctors, Avery passed away at 17 days old. An autopsy revealed that Avery had Alveolar Capillary Dysplasia.
My beautiful daughter is peaceful at last and will never be forgotten. My hope is that one day a treatment can be found so that innocent lives may be saved and the suffering of children and families can end once and for all.
Added: September 17, 2008
Name: Daniel & Carrie Wilson
Our child’s name: Jacob Daniel
The date our child was born: 24/05/08
The date we lost our child: 06/06/08
The hospital where our child was treated: Starship Childrens Hospital, Auckland, New Zealand
The physicians who treated our child: Too many to name
Our story: Jacob was the first twin born at 36 weeks gestation. (He is survived by his twin sister Emma). The pregnancy had been unremarkable apart from a large abdominal cyst that was seen on the right side in antenatal scans. His Apgar scores were 9 at 1′ and 9 at 5′. Jacob was admitted to NICU because of the antenatal diagnosis of the cystic structure in his abdomen. Initially he was stable in air and self ventilating but by 10 hours of age he was having episodes of desaturation. He became increasingly unstable and reqired intubation and ventilation followed by high freqency oscillatory ventilation, nitric oxide and dopamine.
At three days of age he continued to deteriorate and was transferred to PICU for consideration of ECMO. On the arrival of the PICU team he was unable to be moved because he was so unstable so Jacob was put onto venoarterial ECMO there and transported back to PICU on ECMO. Once on ECMO he was stable and inotrope support was stopped. He become very oedematous and required frusemide with good response. He was weaned off ECMO on the 1st June 2008 and decanulated but he was still ventilator dependent. Over the days that preceded his death he continued to deteriorate with increasing saturations and was unresponsive to ventilatory manoeuvres. He became cardiovascularly unstable and he had persistent raised pulmonary pressures.
It was considered that Jacob had ACD and was removed from the ventilator and passed away on 6 June 2008 in our arms. He was just 13 days old. We only got to hold Jacob in the minutes after he was born and then again when the ventilator was removed and he was placed into our arms.
His autopsy confirmed he had Alveolar Capillary Dysplasia and misalignment of the Pulmonary Vessels. He also had a malrotation of the bowel, transverse liver, cystically dilated duodenum and abnormal lung lobation.
” An Angel opened the book of life, to record the baby’s birth, and whispered as she closed the book ‘Too beautiful for earth’ “
Added: September 15, 2008
Name: Leann & Chad Jeffers
Our child’s name: Blake Scott
The date our child was born: November 9, 2007
The date we lost our child: December 25, 2007
The hospital where our child was treated: Minneapolis Children’s Hospital
The physicians who treated our child: Dr. Hustead, Dr. Bendel-Stenzel
Our story: Our pregnancy with Blake was a typical pregnancy. Nothing to worry about and the doctors decided to do a repeat c-section at 39 weeks. Blake was born at 12:01pm on Nov 9. The doctor doing the c-section did comment on how much fluid was there but we didn’t think anything of it. His apgar score was 7 and then 9 and he needed oxygen for a short time but they told us that was normal. That night Blake was in our hospital room and someone commented on his dark looking feet. We brushed it off thinking it was from the ink they used to stamp his footprints. That night Blake never really woke up to nurse and around 6am I had the nurse bring him into the room and I nursed him for about 20 minutes on each side. He never really cried much and slept alot. Around 8am the doctor came in and told us that she heard a heart murmur, the biggest heart murmur she’d ever heard and wanted to send him to a larger hospital. The hospital we were in was only a level one. They tranported him to Sioux Falls Avera Mckennan about an hour away. There they checked him over and told us that he had pulmonary hypertension and with nitric it would open the blood vessels up and after they were open he’d be fine and we could go home. He was on room oxygen for 5 days and then they decided to put him on the ventilator because his echo’s were coming back worse each time. After being at the hospital for a week the doctors there decided that he needed to be flown to Minneapolis Children’s Hospital. They wanted to transfer him so if he got worse he could be put on ECMO. The doctors mentioned ACD at that time but was sure it wasn’t that because he was doing okay and the babies that they had seen with ACD only lived for 12 hours. On November 17 Blake was flown to Mpls. and upon arriving the doctors decided that his heart was going to go into failure if they didn’t place him on ECMO immediately. We had him baptized by our pastor from home and they placed him on ECMO. He was on ECMO for 6 days and the echo reports were comning back that the pulmonary hypertension was ALMOST gone. The doctors were confident about taking him off. After coming off ECMO they kept him on high oxygen and nitric and slowly started to wean him. On December 15 he was taken off the ventilator and just had nose cannulals for oyxgen. It was amazing finally after a month we were able to hold our precious little son again. His big sister was able to hold him and touch him, Grandma was able to hold him. He was a miracle. We were sure that we were going to go home with him. About 5 days later he crashed and was put back on the ventilator and the echo’s were showing that the pulmonary hypertension was back to where we had started. On December 24 we went home to spend Christmas with our daughter and family. Dr. Hustead had mentioned that she thought Blake had ACD and prepared us by banking Blake’s tissues and DNA. That morning before we left they told us that he had pnemonia. We had just finished opening the last gift when our primary nurse called to say that Blake’s oyxgen was dipping way low and we should come back ASAP. We got in the car and made the 3 1/2 hour drive back to the hospital all the while thinking that he had already passed. We got back to the hospital and as soon as the nurse placed Blake in my arms he’s sats soared back up to 100%. I was still hoping and praying that he would pull out of this and come home with us. Sometime in the early morning hours his number went into the teens and there was a moment when I looked at the monitor and saw a flat line. We then decided that he had suffered enough and we took him off the vent. He passed away at 4:38am on Christmas morning with his grandma, grandpa, daddy and mommy all around him. We held him for quite awhile and then with broken hearts we left the hospital for the last time. We wanted to donate his organs but he had contacted MRSA while in the hospital so they wouldn’t take his organs.
Blake will forever be in our hearts. We miss him terribly and not a day goes by that we don’t think of him. We were blessed to have one healthy child but sadly I had my tubes tied after Blake. Maybe that is a blessing because we don’t think we could take the chance of this happening again. We are now on the journey through adoption. We have been chosen by a birth mom and are expecting a baby to arrive around October 1.
Added: July 2, 2008
Name: Erik and Kara Humpherys
Our child’s name: Laykin Shy
The date our child was born: March 18th 2008
The date we lost our child: March 29th 2008
The hospital where our child was treated: St. Josephs (phoenix az)
The physicians who treated our child: Dr.Fortunov, Dr.Gutierrez, and lots of nurses
Our story: We were so excited the day we found out we were pregnant! I had a wonderful pregnancy. No problems besides being sick the first trimester. On March 17th I had a doctors appointment and he decided to induce labor. Nervous but excited we went in to have our baby girl! After being in labor for 12 hours her heartbeat started to drop. The nurses got very nervous and decided to do a
Laykin was born looking beautiful and healthy. She got an apgar score of 8. Curly light brown hair, big blue eyes, 10 fingers and 10 toes! Her cry sounded so cute but the doctor said she needed to cry a little more. So they took her to do some testing.
We waited for her return and then everything happened so fast. The doctors came and told us something was wrong but they weren’t sure what and they needed to transfer her to a level 3 NICU. By the end of that day they thought it was severe pulmonary hypertension and ECMO was her only chance. We set up the trasfer to Phoenix AZ. They told us that she was very critical and they didn’t think she would make the flight.
She was very strong and made it to Phoenix to recieve ECMO treatment. I checked myself out of the hospital and caught the first flight. My husband drove and met us there. It was the first time we got to see her.
Ups and downs the whole time. She was doing better and they decided to take her off ECMO after 8 days. We were so excited and thought we would be bringing her home soon! But things started to go wrong. After multiple chest tubes the fluid around her lungs started to build up, they didn’t know why it kept accumulating. Nobody had very many answers why our sweet little baby was so sick.
On the morning of march 29th when we were on our way to see her, we got a phone call to come in a.s.a.p. We rushed there to see all the doctors and nurses crowding around her, trying their best to save her. When I saw their tears I knew that our story would not have a happy ending.
Holding her for the first time surrounded by all of our loved ones Laykin went to heaven to be our “angel baby”
As sad and scared as we are we are still hopeful to have a healthy baby!
Added: June 23, 2008
Name: Kimberly A. Ratliff
Our child’s name: Charity
The date our child was born: 6-16-2001
The date we lost our child: 7-6-2001
The hospital where our child was treated: U of M Ann Arbor
The physicians who treated our child: Jennifer Grow, M.D.
Our story: Charity was born 4 weeks early due to Placental Abruption. I had emergency C-section, but she still had an Apgar of 9.Weighing 7# 12 oz. 22 inches long. At 20 mins. everything went downhill. She was sent to Hurley Medical Center in Flint Michigan with a DX of persistent fetal circulation. 8 hours later, she was sent to Uof M Ann Arbor. She was @ 40% Oxygenation by then. Her Diagnonsis on her death certificate was PHTN. We donated her for a thorough autopsy. 4 months later, we were told that she had ACD. There wasn’t much info. out there at the time. We did have 2 more healthy children after that. One boy and one girl.
Notes: 1)I had an abnormal triple test.But I was told that Charity was born neurologically intact.
2)I had low progesterone in the first trimester and had to use suppositorries. 3) Charity had normal anatomy, except the absence of a gall bladder.
Added: June 5, 2008
Name: Gene & Vicki Suker
Our child’s name: Gracie Gene
The date our child was born: 10/17/2002
The date we lost our child: 11/22/2002
The hospital where our child was treated: Minneapolis Children’s
The physicians who treated our child: Dr. Singh
Our story: In reading the many entries here, the stories are so similar to our own. My husband and I were extatic to find ourselves pregnant with our first child. I had an uneventful pregnancy up until our 20 week ultrasound. At that appointment we found out the our sweet little girl had a treatable heart defect and would need surgery at approximately 6 months of age to correct it. This news was scary, but we knew everything would be fine. When Gracie was born she looked and behaved like any other healthy baby. It was at about 10 hours old that the doctors discovered she had a lower blood oxygen level. They wisked her away to the Children’s Hospital next door and put her on a ventilator. It was discovered that Gracie had to have surgery to fix a second heart defect which was a narrowed aeorta (coarctation). She flew through this surgery with flying colors at just four days old. We knew she was on the path to recovery after this. Just like many of the other stories told here, our rollercoaster ride was only beginning. Gracie would have long stretches of days, in fact a week to 10 days at a time, where she was getting better and better only to slip back a few steps. She always needed to have oxygen blow-by, even when she was doing great. This puzzled the doctors. She was always a sort of mystery. We almost got Gracie home twice in her five short weeks. The first time it was foiled due to an episode of apnea. Her doctor wouldn’t release her until this was completely checked out. While being checked out, she was getting stronger and acting like any baby her age. We played, ate, took baths, and dressed her in her own clothes. I was in heaven being able to do all this. I didn’t care if it was in the hospital or not. I loved it. The second time we almost got her home was terrifying. Over a period of eight hours Gracie kept loosing ground as far as her oxygen levels went. She really dipped low and was wisked from the-floor-that-prepares kids-to-go-home back to the ICU. She was so sick and had to be placed on a ventilator and nitric. The doctors’ thinking was she needed to have her original heart defect repaired sooner rather than later. The doctors were backed into a corner because she kept getting sicker and sicker. Gracie’s heart defect (an A.V. canal which is similar to a septal defect) was such that it allowed the blood that needed to be oxygenated by the lungs to mix with the blood that was full of oxygen. This made all the blood passing through her body not have enough oxygen to allow her to thrive. Even though she was very fragile, they did the surgery. It was at this time that a lung biopsy was performed. Gracie came through the heart surgery only to be placed on ECMO. She was on ECMO for 3 days before we got the horrid news about ACD. We got the results of the second opinion the fourth day. It was a Friday. We made the decision that she’d suffered long enough and wanted her to feel our touch and hear our voices as she passed away. So it was, at 5:35 P.M. on Friday, November 22, 2002 that our sweet baby girl passed peacefully from our arms into God’s. She touched so many hearts in her short time here. We are so grateful to have had the honor of knowing her at all. But, all these years later, we still miss her terribly. I suspect it will always be like that.
Added: February 19, 2008
Name: Andrew & Diana Locke
Our child’s name: Christophr Josef Locke
The date our child was born: November 7th, 2006
The date we lost our child: December 17th, 2006
The hospital where our child was treated: Shands in Gainesville, Florida
The physicians who treated our child: Dr. Sullivan, Dr. Kays, Dr. Bierle, Dr. Boehnke
Our story: We found out we were pregnant on St. Patrick’s Day. This was not an expected pregnancy but a gift. Our 1st son was 10 at the time, we were not using birth control since 1999 and figured it just wasn’t going to happen.
We were elated. So much planning, sharing…..I had to go and see the High risk OB’s because I would be 39 at delivery.
Our 2nd ultrasound showed “something” in the abdomen that the high risk OB’s thought was “fetus in fetu” (a twin inside of a twin).
As a surgical nurse, I knew that could be fixed if needed. So no worries.
Every ultrasound visit was nail biting for us. Our docotrs kept “looking” for anything abnormal. Anything they could find. So they found things. But apparently not the right things. Our precious angel had enlarged left kidney, small chin, big stomach, flat bridge of his nose, and a VSD (ventricular septal defect in his heart)
No problem, I said. All can be fixed or explained away. My mom has a small chin, we all have a flat nose, other stuff can be fixed…..
I ended up with over 5 liters of fluid (amniotic fluid). It caused me to tear the muscles in my abdomen, which caused excruiciating pain for the last month of my pregnancy.
All along the way, I protected Christopher. I wouldn’t let the nurses “zap” him to get his heart rate up, I told him I would protect him from the mean doctor, and everything would be fine.
Little did I know, it wouldn’t be fine.
We had our precious bundle at 38 weeks by c-section because I couldn’t walk (from the pain and the fluid), I was getting short of breath (my uterus measured as if I was 47 weeks pregnant) and the doctors were starting to worry about when and if my water broke, cord prolapse, uterine bleeding and emergency hysterectomy.
Our son was born at 6:33pm on November 7th. He was beautiful. Not a strong cry but at least peeing on the doctor.
I found out after his transfer to another hospital all that went wrong from birth. He was not breathing well when he 1st swam out (which he did from all that fluid). His o2 sats were never higher than mid 80’s, pressure just not high enough.
He was also born with imperforate anus (I still wonder why they didn’t notice this on the 3D ultrasound we did), duodenal atresia (stomach not connected to his intestines), and the other problems we knew of.
He was very “persnickety” from the beginning. Didn’t like to be moved, pressure would go too low, sat’s too low.
Within his 1st 24 hours of life, he underwent major abdominal surgery to connect his stomach to his intestine and create a colostomy. We found out then that he pretty much “coded” on the table but no CPR needed to be performed. The heart doctor cleared him and said it was PPHN and would resolve in a week or two. When they brought him out from surgery, it went downhill fast. That night, it was decided to send him by helicopter to another hospital that had an ECMO program.
Our story is so similiar to everyone’s. The ups and downs. The rollercoaster ride of dread and then pure joy at the good days.
I felt something with Christopher. Like I knew he would never come home. We never got to hold him until we took him off of life support. Christopher made the choice of when it was time. It was almost like he knew we could not handle that decision. He quit absorbing the oxygen from the ECMO and the ventilator couldn’t breath for him anymore.
After 39 days on ECMO, our little guy grew his angel wings. I think they were there all along we just couldn’t see them.
During the last week of Christopher blessed life, I did alot of research on the internet and always came across the same thing: ACD. Something that our doctors had a very small suspicion of but did not want to put him through a biopsy to find out. We were talking about doing a biopsy that next week.
We met with a team of doctors to discuss the autopsy results after about 3 months and the pathologist said it was his heart defect that did it. The cardiologist (who was there) did not agree and I presented all the doctors with information I had gathered from various sites about ACD and what to look for during an autopsy. We asked the pathologist to relook at his tissue samples and use the special dyes that all the articles mentioned. The pathologist called in the senior semi-retired pathologist to help. Out final diagnosis on cause of death was ACD. The senior pathologist said he had only seen 1 other case in his 30 years at Shands.
In our battle to overcome the loss of our so wanted child, I have dedicated myself to making others aware of this devastating defect. As a nurse, I have a way into the ears of doctors. I know the medical community and plan on using this as a way to help raise funds and help in any way with the research.
I feel that if I do so many things, God will finally tell me why this was to be. I may stumble upon that answer someday, but until then, I can only hope and pray that we find a cause, way to detect it and cure it soon.
I look forward now to the day that I am predestined to die. Because I know I will finally get to hold my angel. He lives on with us every day and watches over us. As all our angels do.
Added: November 16, 2007