This story is about a very rare , very serious disorder called DiGeorge syndrome.
On 10-18-07
Elijah was born weighing in at 3#11oz. & 16 " long. Minutes after his birth, it was discovered that he did not have a pulmonary artery. This is the main artery in your heart! He was med-vac ed to jackson, ms. where he spent the next 33 days on a ventilator. Once he was regulated he was put on portable oxygen and a heart monitor + 7 medications. Soon after that he had a grandmahl seizure which led to the discovery of DiGeorge, also known as 22q deletion. Now, there is a simple test that can be performed BEFORE pregnancy to determine this syndrome. If you are a carrier you should not risk having children. Most DiGeorge babies do not live past 1 year. We were lucky, we had 13mos.& 11 days with our "Beans".
April 14,2008 , we went to Boston ,Mass. to have a pulmonary artery built. The operation was a success,but there were terrible complications and he barely weighed 6 #. After 6 long weeks in boston, we finally came home. Throughout his life, he suffered many complications. After the initial surgery, he was off portable oxygen and breathing on his own, but was on 9 daily meds 4 times a day. He did not have an immune system, hypocalcemia caused seizures,hyperthyroidism caused delayed growth and depleted his strength. He hardly ever left home , except to go to Dr. appts. Still, he was the center of my universe.
Thanksgiving 2008, he was doing very well, had not been sick, and finally weighed 10# 3oz.!
He enjoyed pumpkin pie and cranberries!
Sat. Nov.29,2008, He became adjatated, my daughter, his wonderful mother, called to ask if we could take him to the e.r. because he didn't seem right.
Upon arrival to the e.r. he rapidly deteriorated before our eyes. As his mommy, pa-pa & I held on tight and prayed to God to help him he went into kidney failure from Edema, and within 30 minutes he was gone. My sunshine had burned out . FOREVER.
The e.r. doc said he had never seen anyone taken over by edema so quickly, he said Elijah's arteies had closed up. If he had gotten a heart cath done a week before, he would be alive today.
The heart cath had been scheduled for Dec.4
Please read all you can on DiGeorge before becoming pregnant. And if you are living with a child with this syndrome, I will do anything in my power to help you get the help that you need. We were floundering about in a sea of doctors with little understanding of this horrible syndrome.
My daughter and her husband will not be able to have any other children due to this.
...... We are so lost right now and the pain is so debilitating it is hard to breathe........
i love && miss you little man.
ReplyDeleteBETTER KNOWN AS PAPAS LITTLE MAN. THE DAY HE ENTERED MY LIFE WAS THE HAPPIEST DAY OF MY LIFE. I HAD ALWAYS WANTED TO HAVE A GRANDSON TO TAKE HUNTING, FISHING AND TO JUST SPEND TIME WITH. I BUILD SHOWCARS AND COLLECT HOTWHEELS AND HAVE ALWAYS TOLD EVERBODY HE WAS THE ONLY BABY I KNEW OF THAT HAD THREE CARS OF HIS OWN AND OVER 700 HOTWHEELS. HE WAS THE MOST PRECIOUS THING THAT HAS EVER ENTERED MY LIFE AND FOR THE PAST 13 MONTHS NOTHING ELSE IN LIFE MATTERED TO ME BUT HIM. HE WAS MY REASON FOR LIVING. WE WOULD SPEND HOURS ON THE COUCH OR ROCKING IN THE RECLINER WATCHING TV. SPONGEBOB WAS HIS FAVORITE SHOW AND HE LOVED TO WATCH TV AND TAKE NAPS WITH PAPA. I WOULD HOLD HIM AND TELL HIM THAT PAPA WAS HERE AND PAPA WAS GONNA FIX IT. BUT ON SAT NOV. 29 2008 AT 11:50 A.M. MY LIFE AS I KNEW IT WAS OVER I TOLD HIM I COULD FIX ANYTHING AND AS I WAS HOLDING HIS HAND HE LOOKED AT ME WITH HIS EYES AS TO SAY PAPA PLEASE FIX IT BUT THERE WAS NOTHING I COULD DO. AT THAT VERY INSTANT IT WAS AS IF MY HEART HAD BEEN RIPPED OUT AND I HAD LET MY LITTLEMAN DOWN AND MY REASON FOR LIVING WAS GONE. I AM SO LOST WITHOUT HIM I DONT KNOW WHAT TO DO. NOTHING ELSE MATTERS TO ME ANYMORE. I WOULD HAVE GONE TO HELL AND FOUGHT THE DEVIL A MILLION LIFETIMES JUST TO HAVE ONE MORE SECOND WITH HIM. THAT'S HOW MUCH HE MEANS TO ME. IT MAY SEEM AS IF I'M WRITING THIS AS IF HE IS STILL HERE WELL TO ME HE IS AND ALWAYS WILL BE. I AM A HARD PERSON TO GET TO KNOW AND A VERY COURSE PERSON AND NEVER THOUGHT I OF ALL PEOPLE COULD LOVE A BABY AS MUCH AS I LOVE HIM. I AM A MATERIALISTIC PERSON AND NEVER WANTED TO DIE FOR FEAR OF LOSING WHAT I HAD. BUT AT LEAST NOW WHEN I DIE I KNOW THAT I WILL BE WITH MY LITTLEMAN. ELIJAH CALL I LOVE YOU AND MISS YOU MORE THAN ANYBODY WILL EVER KNOW YOU WILL ALWAYS BE WITH PAPA NO MATTER WHAT.
ReplyDeleteLOVE PAPA:::::
When Elijah Caldwell Marsh was born on Oct. 18th 2007 in West,Point hospital we had found out that he had an enlarged heart and no pulmunary artery and a small hole in his heart.It scared Chris and I very much we were terrified. They had to rush him in to Jackson children's hospital as soon as possible. When we've been there few days later his heart doctor said he had a case of 22q deletion with a DiGeorge Syndrome. They told that he would'nt pobably make it. I had found out that I had DiGeorge and my family and I didn't know it until I got tested in Jackson hospital after he was diagnosed with it.For the mothers out there that is about to be pregnant or are pregnant I would advise for you and your husband to be checked out because you may never know what could happened to your child. This is a very genetic disorder. This is for all mothers and fathers.
ReplyDeleteIf you have information about DiGeorge or 22q you would like to share let's help each other get through this.
When I first looked at my baby boy I was so scared to hold him because he was 3pounds and 11 ounces at that time and also he was on so many cords and iv's and everything else. My husband and I had brought him home from the hospital right before Thanksgiving. He was on heart monitors and oxygen for four months. On April 8th we went to Jackson hospital to do his first heart cath. We've were both scared more than anything. We were not prepared to stay neither. When we've sat in the waiting room for 4 hours the doctor finally came out and took Chris and I went back in the back. We knew right then something was wrong.The doctor said that his oxygen level is not doing very well. So, they finally sent him off to Bosston,Mass. We were so scared to go because they said he woudln't have that much time to live. So we finally got on the medical jet and flew up there for 3 and half hours. My family and my husband came on another flight right behind me and followed me up there. In the next two days they finally camed and took Elijah into the heart surgery. We've sat in that waiting room for 5-7hours long and making our self sick just making sure that he came out of it. We prayed so hard for him to be ok after the surgery. After several hours went by the doctors camed out and told us everything was fine. We all finally went in and seen him he was on all kinds of tubes and 19 medications and his chest was wide open. It scared my husband and I very bad it felt like it was a nightmare. But after 6 weeks in Boston we finally camed back to Jackson. Then we were in Jackson for another week to make sure that he was stabble enough to come home and we finally camed home I was so happy that my family was back together.
ReplyDeleteAfter everything got settled back at home with him everything got back to normal and we were so happy. On Oct. 18th we through him a big b-day party at McDonalds his 1year b-day. We were so happy that he was doing so good and he was starting to eat alot of foods and starting to gain alot of wait. When Thanksgiving camed around we had a big Thanksgiving dinner and he ate like a pig. He had turned 13 months old and was growing. On Nov.29 at 8:30 am I knew something was not right so I had called my husband and my mom to come and make sure that I wasn't seeing anything wrong. Elijah was't himself we took him off into the ER and hour later he passed away and the Edema took over his body. Setting there in the ER watching your child die it was a night mare. My husband has not slept for several weeks. But, one day Chris and I we will be up there with our son again soon. Elijah I want you to know we both love you very very much you are in our hearts no matter what. Phillipians 4:13 I can do all things through christs which strenthens me! We love you baby boy always.
ReplyDeleteELIJAH CALDWELL MARSH WAS EVERYTHING TO ME I MISS HIM VERY MUCH. I LOVE HIM MORE THAN LIFE ITSELF. EVERYDAY I FEEL LIKE HE IS WITH ME AND SOMETIMES I TALK TO HIM IN HEAVEN AND IT MAKES FEEL A LITTLE BETTER BUT I STILL MISS HIM VERY MUCH. HIS MOM AND I DONE THIS BEST WE COULD TO HELP HIM GET BETTER EVERY DAY SOMETIME I FEEL IT WASN'T ENOUGH BECAUSE HE IS IN HEAVEN. I KNOW HE IS IN A BETTER PLACE BUT I WISH HE WAS IN MY ARMS EVERYDAY. I LOVE IT WHEN HE WOULD LOOK AT ME AND SMILE AND HOW WHEN MOMMY COULD NOT PUT HIM TO SLEEP SOMETIMES AND I WOULD GET HIM AND ROCK HIM AND HE WOULD SMILE AT ME AND GO TO SLEEP. HE WAS GOING TO GO HUNTING WITH DADDY BUT BUT FOR SOME REASON GOD DID WANT THAT TO HAPPEN. I ASK GOD WHY HE TOOK HIM FROM US EVERYDAY. I HAVE GOOD DAYS AND BAD DAYS. BUT I CAN TELL YOU THAT IT IS THE HARDEST THING I HAVE EVER BEEN THUR IN MY LIFE.I DONT WISH THIS FEELING THAT HAVE RIGHT NOW ON ANYONE. I KNOW THAT ONE DAY ELIJAH WILL BE IN MY ARMS AGAIN BUT IT IS HARD TO KEEP GOING ON WITH DAILY LIFE BECAUSE WHEN HE DIED IT FELT LIKE TIME STOP BUT THE CLOCK KEPT MOVING AFTER HE WAS GONE IT JUST DOESNT FEEL RIGHT. I LOVE U VERY MUCH ELIJAH CALDWELL MARSH I KNOW THAT YOU ARE MY LITTLE GUARDIAN ANGEL...
ReplyDeletePS. KEEP ME AND MOMMY AND ALL FAMILY MEMBERS SAFE . HAVE A MERRY CHRISTMAS
I am so sorry for your loss. I am sitting here in tears as I watch my daughter who also has Di George play. She is 6 years old. As I read you story I kept thinking I wish they were in Utah. Primary Children's Hospital has bee so wonderful to us and they saved my daughter's life several times. She is small and slightly delayed but doing great in Kindergarten. I will be posting a link to your blog from vcfsfamilies.blogspot.com it's a relativly new blog but we are all in search of ways to keep our kids healthy and happy and educate people about DiGeorge.
ReplyDeletei love and miss you terribly little man.
ReplyDeleteyou will ALWAYS be the LOVE OF MY LIFE!
i dont know what to do without you.
i will NEVER love anyone as much as i love you little man.
love aunt jordyn
To the Marsh Family,
ReplyDeleteWords cannot express how deeply saddened we are to hear of your loss. I can only imagine the grief you all feel. We had the pleasure of meeting you under less then ideal circumstances at Boston Children's Hospital but in the brief time we spent together it was plain to see you are all wonderful people and you loved your little boy as much as we love our little girl Addison. You made a big impact on my family and we all prayed for Elijah. We will continue to pray for your family and hope that your precious memories help get you through this extremely difficult time.
God Bless you,
Heidi, TJ and Addison Ebol
I have met Janet through facebook and my heart goes out to ur family...I also am going through or I have went thru similar events with our son Ethan..I do know this they are playing in heaven and we all will not let this ever go unnoticed!!
ReplyDeleteI too have tears for you and struggle with your loss, my grandson was just 3 years old and has DEgeorge syndrome and truncus arteriosis. I am so sorry for your loss and will remember your family in prayer!
ReplyDelete