Total Entries: 179
Debra MozoWednesday, 11/22/06, 12:32 PM
I am sorry to read of your loss. Reading about Derek's story brough tears to my eyes. My daughter Mia was born 9/20/05 at Children's of Milwaukee, she has undergone the Norwood and the Glenn. Now at 14 mnths, she is progressing well, however, I wonder for her furture. I wouldn't know how to cope if I ever lost her.
From:Waukegan, IL
KimberlyWednesday, 11/8/06, 12:34 AM
I am very sorry for your loss.
From:St. Louis, MO
Will & Joan MolloyWednesday, 7/26/06, 8:30 AM
Reading your story brought back a lot of painful memories,but we were lucky to have had almost 11 months with our little boy.HLHS was the reason we lost him too.Thank you for sharing your story.
From:New Jersey
Web Site: Owen
pamWednesday, 7/6/05, 5:56 PM
I am speechless. Such an emotional rollercoaster ride that brought back a flood of memories. My son Brian is also a hlhs with reflux. He is still with me and my other three kids. His heart was repaired at Children in Boston (all three operations by 11 months!) His heart is doing Great, but his reflux still bothers him and he needs to be on two meds (nexium & zantac) to prevent vomiting. My prays for you and your son.
From:salem, nh
pamWednesday, 7/6/05, 5:54 PM
I am speechless. Such an emotional rollercoaster ride that brought back a flood of memories. My son Brian is also a hlhs with reflux. He is still with me and my other three kids. His heart was repaired at Children in Boston (all three operations by 11 months!) His heart is doing Great, but his reflux still bothers him and he meed to be on two meds to prevent vomiting. My prays for you and your son.
From:salem, nh
rosealina goncalvesSunday, 7/3/05, 2:59 PM
reading your story really touched me. my daughter died of hlhs 2 weeks after the norwood pro. she threw a clot during the night, into her lung. i wasn't there w/ her and have still not been able to forgive myself. those 4 weeks were the "best" and worst weeks of my life. its never been the same, i've never been the same. my heart and prayers to you and your family.
From:long island, new york
HeatherFriday, 5/13/05, 10:34 AM
I just read Derek's story and am in tears. What a beautiful baby he was. I am 34 weeks pregnant with a baby with a severe heart defect. She is not expected to live once she is born. My husband and I have known about the defect since January but were just recently were told that they don't believe she will survive and we are trying to come to terms with this. Thanks for sharing your story. Heather
kim sladekSunday, 5/8/05, 7:57 PM
From:orange nsw australia
JodiFriday, 5/6/05, 9:22 PM
So sorry to hear of your loss. Will be thinking of you this Mother's Day. Derek is lucky that he had such wonderful parents. Thank you for sharing your story. Derek is such a beautiful boy. God bless, Jodi Mom to Anthony (Tetrology of Fallot)
Autumn BowersSunday, 4/3/05, 7:51 PM
My son was born on January 27, 2005. He went to heaven on March 4, 2005. Thank you for sharing your story.
From:Indianapolis, IN
CindyTuesday, 3/8/05, 7:04 PM
Thank you for sharing your story. Your decision was right and my heart goes out to you and your family. Believe me you will never forget your special angel. It's will be 26 years May 16th that we had our 2nd son, Jimmy. I wish there were computers in 1979, as my husband and I struggled with losing our wonderful big baby boy Jimmy to HLHS. We had great doctors, but no way to find another couple dealing with HLHS. I am so glad to see there is hope for babies born with HLHS and the babies have a chance to survive. I am so glad that there are now ways for parents to communicate and share their stories. Some happy and some sad. The many websites I have seen about children with HLHS warm my heart. It's so wonderful that there are options, because in 1979 we were given no options or even hope for our precious baby. We could only watch our second born baby boy pass on. Jimmy passed away May 21.1979 at 5 days old. I cherish his memory to this day and always will. After Jimmy we had one more son Billy. Our two living sons are now 29 and 24 years old. Both are healthy and good young men. Thank you again for sharing your story and letting me share mine with you. Sincerely, Cindy
Natasha GoldenWednesday, 1/5/05, 2:32 PM
Denita my daughter has hLHS and she is nine years old now.
Gabreal MoralesSunday, 12/19/04, 8:05 PM
I am sorry Derek lost his battle to something like that. He sure seemed like a wonderful little guy and he has touched lives all around the world. I was hoping your story may raise awareness to prevent somthing like this to occur agian. My daughter was born with HLHS in oct. 2004 we are currently still in the hospital at university of minnesota and she had a sano norwood when she was two weeks old and so far cardiac wise she is doing excellent she has been bottle feeding but not good enough so they are going to do a nissen and g tube surgery tommarrow and then they say we'll be able to take her home. Lately her sats have been droping and she has required oxygen but they can't tell me why they did an echo of her heart but say it's fine and they did a chest x-ray and that was fine. Her blood presure has been kind of high but they don't seem overly concerened. I have been very nervouse about the nissen and g tube and I wish she didn't need it but they say she needs to gain weight. I was hoping that you may find the time to visit our sight at marianna's story on the little hearts story's page and answer through our guestbook maybe you know what warning signs to look for to investigate before it gets to the point of no return. I understand if you don't I realize it is painful to think back at that time in your life but your thoughts suggestions and input would be greatly appreciated. sincerley Gabreal Morales mommy to marianna post sano norwood.
From:minneapolis MN
Web Site: mariannaellen
CindySaturday, 11/20/04, 8:29 AM
I'am so sorry for your loss. Your story hit home with me because we went through a different but similar situation with our daughter Jillian. Jillian was born in 2003 with L-transposition of the great arteries, pulmonary atresia and vsd. Her first surgery at 5 days old in Boston, was a B.T. Shunt. They did this to buy her time until she was big enough to do her big double switch operation. When Jillian was 3 weeks her shunt clotted and she was transported to Boston Childrens Hospital with sat's in the 30's. We were told that she might not make it. When we arrived in Boston, (I was with her in the ambulance) they immediatly put her on ECMO, which is a lung bypass machine. They told us this was to reoxygenate the blood in her body to prevent any further damage to her other organs. They performed the cath that revealed her clotted shunt and kept her on ECMO until the next day when they performed another surgery to repair the shunt. After the second surgery she remained in the hospital for about a month because she would not take her bottle. They tried the Zantac, maalox, and other stomach drugs too. Eventually she did take her bottle and came home. She had a big operation at 4 1/2 months old and she is 17 months old now and doing wonderful. She had a rough first year because she also had a cleft lip and pallate that she endured 3 surgeries to repair. Due to the pulmonary atresia she will need further heart surgery in the future to replace the conduit to her lungs. When I read your story I just cried. Your son is truly beautiful.
From:Rhode Island
Robin BenefielFriday, 11/5/04, 3:08 PM
Your son's story is so touching. My heart goes out to you for what you have endured. I lost my youngest daughter, Magen, April 13, 1991. She was 17 days old. Magen was born with Pulmonary Atresia. She died from an infection nine days after open-heart surgery. Magen never made it home from the hospital. There is not a day that goes by that I don't think about her. Our second daughter, Caitlin, was also born with a heart defect. Her's was corrected with a balloon angioplasty when she was six months old. She is now 15 years old. I am so thankful for her. I am so sorry for the loss of your angel. Sincerely, Robin Benefiel
From:Shelbyville, Indiana
Gloria E. OrtizSunday, 10/24/04, 4:49 PM
Derek is an Angel
From:Puerto Rico
Email: mopa@prtcDerek
RebeccaThursday, 10/14/04, 7:41 AM
As I read about Derek, and your journey, I cried for you and your family. You have memorialized him in a wonderful way, he is such a handsome boy. My son, Logan Wade, was born on April 28, 2004, with HLHS. He has undergone the Norwood, and the Glenn at 3 months, + two heart caths. He is doing well today. We are greatful for your courage, which proves to us that miracles can happen, and your "lttle buddy" is truly a miracle. God Bless You
From:Tomball, Texas
RebeccaThursday, 10/14/04, 7:41 AM
As I read about Derek, and your journey, I cried for you and your family. You have memorialized him in a wonderful way, he is such a handsome boy. My son, Logan Wade, was born on April 28, 2004, with HLHS. He has undergone the Norwood, and the Glenn at 3 months, + two heart caths. He is doing well today. We are greatful for your courage, which proves to us that miracles can happen, and your "lttle buddy" is truly a miracle. God Bless You
Erika Klitzke, RNMonday, 10/4/04, 1:10 AM
I am a PICU RN at Vanderbilt Childrens Hospital in Nashville, TN. Thank you so much for sharing your story.I really appreciate it. Thank you Erika Klitzke
From:Nashville, TN
christin and tommy duncanTuesday, 9/28/04, 9:50 AM
thank you for sharing your story, we just lost our son thomas on 9-12-04 to hlhs. by reading your story, you having so much strength to go on has provided me with courage. we do agree that losing a child is something undescribable. we unfortunately never had the chance to bring our son home. they found his hlhs the day of his discharge and immediately took him to university of missouri hospital nicu and had his first surgery there. he came out of his surgery great, but his blood pressure dropped the next day and he went into a coma. my husband and i feel that is when we lost our little guy. thank you again for sharing your story.
From:marshall, missouri
Angelina and AubreyTuesday, 8/31/04, 11:35 AM
Thank you so much for giving your son the acknowledgment that he so deserved.. I found out last year when I was 5 months pregnant that my daughter had HLHS. She was born Jan 16-2004.. She just had her second open heart surgery.. She had many problems after her first surgery, seizures, a stroke and her lymph nodes leaked.. Thank God she's great now. Your son is so beautiful.. We are so lucky to have been given these special gifts from God. Thank you for sharing with all of us the other side of the reality of our precious babies and their heart defects. This Mommy truly appreciates your courage.
KimFriday, 7/30/04, 12:05 PM
My deepest sympathies are extended to you. I cannot imagine what the loss of a child would be like especially one as precious as your son. What a blessing it must have been to have had such a precious bundle of love. I wish you both the best and much happiness in the future.
From:Philadelphia, Pa
Nicole NowickiTuesday, 7/27/04, 11:43 AM
I am so very sorry for your loss. I too lost my 9.5 year old daughter Kassie to HLHS and CHF last summer. It has taken me this long to look for others that know what I am feeling. It is so funny how those tiny, and I mean tiny little folks touch so many hearts and lives. I just wanted to say hi and let you know that you are not alone. From one Heart Mom to another, God Bless Nicole
From:Waterford, MI
Pamela AustinSunday, 6/27/04, 8:51 PM
I am sorry for your loss. My little girl was born 7- 6-99 with HLHS. She will be 5 years old in a week and is getting ready to go for her third surgery. We just had our third heart cath. about two weeks ago and everything was fine. I just wanted to thank you for sharing your story.
From:Union, South Carolina
debbie murrayWednesday, 6/23/04, 1:32 PM
hi my name is debbie and my daughter michele was born with tricuspid atresia. she had 3 open heart surgeries and 4 caths before she was 2. she is now going on 5 and is doing well. i thank god everyday. i am sorry for your loss and i hope you all are doing well.
debbie murrayWednesday, 6/23/04, 1:14 PM
I am very sorry for your loss.
Web Site: debjm30
Page RengerWednesday, 6/16/04, 7:33 AM
I have a former neighbor who's son was also born with a heart problem. I have been keeping up with them (they are at CHOP) - their son's condition has been like a roller coaster, and he certainly isn't out of the woods yet. Your story was beautiful and your son sure was a fighter. He's an angel now.
From:Charlotte, NC
Jane SweeneyTuesday, 6/8/04, 5:24 PM
Thank you for sharing your personal story and including pictures of your son. I wish I could provide magical words to ease the pain but I have not experienced such a loss. My husband would have a better understanding because he lost a daughter over 28 years ago after she had heart surgery. She died on her 1st birthday. Just last week our son, 16 months old, was diagnosed with PFO, VSD, and a dilated aortic root. My husband is beside himself. In the past couple of days it is just starting to hit me. Children's Hospital in Boston gave me the name of and that is how I found your story. Thank you for sharing it with me. Jane
From:Cape Cod
Jennifer and Howard StalkerFriday, 5/7/04, 10:04 PM
Thank You for sharing your story. My son Logan died of Hypoplastic right heart. He died on April 2nd 2004. He lived 26 days. I am happy that you got to have your angel as long as you did. By reading your story he sounded like a great little boy. I hope God bless you with another child. God Bless Jennifer
From:Virginia Beach Va.
MichelleFriday, 4/30/04, 1:31 PM
Thank you so much for your story of your beautiful little angel. My son Dustin was born 11-27-03 in Ann Arbor Michigan with HLHS. He passed away 12-03- 03 one day after his Norwood. Keep sharing your story
Web Site: Jolleyfamily
Frank & Lee KiernanTuesday, 4/27/04, 12:50 PM
We loved your story and photos. Our prayers are with Dereck and both of you.
From:Stratford CT
CindyMonday, 4/5/04, 2:42 PM
I'm crying while writing this for you and for us. My son and daughter in law were just told today that their baby has the same heart defect that your little one had. Carson's birthday should be Aug 19, 2004 but they are facing a tough decision as to whether or not to continue the pregnancy. Our hearts are all breaking. I'm an RN but I have not advise to give. God bless these babies.
From:Ashland Ohio
JenniferTuesday, 3/16/04, 3:55 PM
Thank you for sharing your story about your brave little angel. I can't imagine your pain. I have a little baby girl who is 6 months old now with hlhs. I pray that time has healed your pain.
Web Site: Mikayla's Heart
ShelbyFriday, 2/27/04, 2:47 PM
Hi Guys, Thank you so much for sharing Derek's story.. My daughter was born with a heart defect also and has had 2 open hearts and 4 catheratizations.. I can't imagine what you must have gone thru out thought's are with you and your family. Once again thank you for sharing your story with others.. Shelby
ShelbyFriday, 2/27/04, 2:44 PM
ShelbyFriday, 2/27/04, 2:44 PM
Noel PoyntonTuesday, 2/24/04, 3:28 PM
Hi Michelle, Thank you for taking the time to write about your experiences with HLHS. It is a tremendous help for my wife and I to read about the syndrome from people who have experienced it first hand. I am so sorry for your loss, he is an angel now, and back in his creators hands. We received the news today that our unborn child has been diagnosed with HLHS. We are in total shock and are searching everywhere for more information, to help us deal with the news. So thanks again for your story. God bless you and your family. Noel & Delys Poynton
From:Living in Boston, originally Ireland
Billie JohnsonTuesday, 2/24/04, 7:27 AM
Michelle, you have such a awesome tribute to your little buddy. He was just a handome little feller. Thanks so much for sharing him with me. It is funny cause we always called Aaron "Our Little Buddy"
From:North Carolina
Web Site: In Loving Memory Of Aaron
Meghan McClureWednesday, 2/11/04, 3:39 PM
Hello~ My name is Meghan McClure. I have a 5 month old daughter named Chloe who has CHD..complete AVSD and coarctation or aorta. She has had 3 surgeries since she was born. I read your story about your little guy, and it brought tears to my eyes. You both were able to spend time with an adorable little one, and you are able to cherish those moments forever. There have been many rough times in the hospital, times when I believed that Chloe should not have to endure any more, and you are an inspiration to me. Little one's are fighters, and they do tell us when they have been through enough. I just wanted to say thank you for sharing your story...thank you.
From:Sioux City, IA
Fiona BeavanFriday, 1/23/04, 7:20 AM
Dear Mick and Michelle, I am so sorry for your loss. I read your web pages before I gave birth to my son in Sept 2003 and have just stumbled upon them again. My beautiful son, Joshua died aged just 4 days from HLHS (diagnosed at 6ths preg scan) and TAVPD (diagnosed at birth). It was a wonderful four days and we will be forever grateful that he lived long enough for all his siblings to hold and love him too. Thankyou for your pages, it is good to know that others are there who understand my pain! Fiona
From:North Wales,uk
Web Site: Joshua's page
leanneThursday, 1/22/04, 6:29 PM
hi,my name is leanne paul. i am 26 years old,i live in knoxville,tennessee. loved the story about your son derek.i had to fight back the tears,it was a sad story. my son logan was born with pulmonary atresia with vsd.he was not even twelve hours old when we got the news.we had to make up new dreams for him. he was a very happy little man. you could not even tell he was sick.he was born on april 15th and he passed away on september 7th.he got a cold the 4th and he did not get over it.i was cleaning out his nose when he went limp,then he turned blue,and then he stopped breathing. he died in my arms at 11:30am.we had him cremated,i could not put him in a casket and put him in the ground. anyway,i wanted to tell you that you had a georgous little man.
RachaelFriday, 1/16/04, 12:54 PM
My name is Rachael, I am currently 32 weeks pregnant with a baby girl diagnosed with HLHS due in March. I went onto the little hearts website and saw your story. I am preparing myself for the best possible scenario and also the worst cause I understand it could go either way. I am so sorry for your loss and am here for support. Rachael in CT
AndiWednesday, 1/7/04, 4:25 PM
HI, my name is Andi and I just wanted to say that I am so sorry for your loss. I also lost a little boy named Jonah on Dec 18. He was just over 3 weeks. Unfortunately, he never made it home. He had a very rare heart defect that they tried to fix with the same 3 surgeries as what you were facing. He never made it through the first one though. His little chest was left open and they never were able to get it closed. This is such a difficult time, but know that there are others out there who understand and are willing to listen. Please feel free to e-mail me and check out my little man's web site. He was touched by so many as was your little boy. They must be up there playing happily together now. Take care. Andi Jonah Lucas-- Nov 25, 2003- Dec 18, 2003. You will always be loved and forever in our hearts.
From:Clarksville, TN
TERESA SMITHThursday, 12/4/03, 7:30 PM
Hi, My name is Teresa Smith, and I have a 9 month old son,who has HLHS. Luckily he was diagnosed when I was 20 weeks pregnant, so we were able to keep a close eye on him. I am so sorry to hear about little Derek, you are right, he is a very handsome little guy. Our son, Michael is doing really well, he had his 2nd surgery in August. My heart just fell to my stomach, when I read about you and your husband having to make such a decision on your childs life. I think you are 2 of the bravest people I have ever met, and I also think you made the right decision, I don't believe I could let my child live like that either. May God bless you always, I will remeber your story forever, your family is in our prayers. God Be With You, The Smith Family, Mike, Teresa,Madison&MIchael
Carolina CanaanMonday, 12/1/03, 5:54 PM
Hello, Im sorry for you is a very sad story but you did all you could do. My nephew story is not as sad as yours but i want to share it with you. Manuel was born on july 16th he seems like a normal baby but after 22 days old his mom noticed that he was not breathing well so we took him to the hospital and the doctor told us that he had hypoplastic left heart syndrome. At first we didn now what that means we were very confused. The doctors in my countru told us that there was nothing to do with him that we should let him die, of course we didnt do that. We started to look informations about hlhs and we found out the norwood procedure. We dind have visa but we sent the diagnosis to many diffrente hospital in us and no one aceppted us. Fortunally we get the visa and decided to go to miami. we went to the Jackson Memorial hospital but they received us because we didn have enough money to pay the surgery. Finnely we found Dr. Norwood and he aceptted s in the Nemour Cardic Center in delaware. Now manuel is getting well from the first satge of the norwood procedure and we are foundraising for the next surgery because we dont have the money and it will cost 30,000 the second and 43,000 the third. Well its a long story but belive me Its been hard.
From:Dominican Republic
MicheleFriday, 11/28/03, 1:38 PM
Sorry to make a double entry. My url didn't come up the first time.
From:New York
Web Site: Michael is an angel
MicheleFriday, 11/28/03, 1:35 PM
Tears are rolling down my face as I read your story. I am so sorry for your loss. What a beautiful litle boy! We loss our son, Michael when he was 13 days old on August 27, 2003 because of a congenital heart defect(Transposition of the Great Arteries). Thank you so much for sharing your story. God Bless.
From:New York
Kateena brooksTuesday, 11/25/03, 2:00 PM
I can imagine what you all went through with your loss. Derek was a true miracle and a fighter. When our children are born with this wicked heart defect it is no telling what is going to happen. Our son Daniel went to heaven at 6 months old. Of HLHS, but what killed him was a bacteria called Endocarditis on his trucispid valve it deterorated. (killing the valve) Derek is such a handsome angel and is a true blessing. Thank you so much for sharing his story with all of us. Kateena handsome angel daniel lee HLHS 1-31-02 to 7-31-02 or handsome proud big brother mitchell jr 7 yrs old hh
Web Site: In Memory Of Daniel Lee Brooks
TASHA COLLINSTuesday, 11/25/03, 8:50 AM
he is so sweet. i also lost a son (riley) with hlhs. he was born on sept. 30 2003. he went to be an angel on oct.23 2003. i hope that you cherish all of those cute pictures, as i know i will. tasha
Janet DeFazioMonday, 11/3/03, 1:46 PM
What a beautiful story. My dear friend Nancy has a grandson with HLHS and is about to have the second surgery and we are all very worried and optimistic at the same time. I was searching WebMD from work and somehow came upon this website and am anxious to tell them about it. His name is Joshua and will having his second surgery the first week of December at Children's Hospital in Philadelphia. I am so sorry for the incredible loss you have experienced. He was certainly a handsome fellow and it is certainly very clear the love that you all had for that little guy. He was blessed to have you for the short time that he was here with all of you. May God continue to hold you in his arms. Janet
From:Richmond, VA
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