- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Late Term and Child Loss
Introduction...
On January 30th, 2012 we found out we were pregnant with our second child. Even though our daughter was just ten months old, we were thrilled. The pregnancy was perfect and uneventful until the 20 week ultrasound. Drew immediately showed us he was a boy, but they also discovered a problem with his bowels. The next day I went to a high risk ob and had an amniocentesis to see if we could discover the problem. Results were going to take several weeks so they made an appointment for me to return in three weeks to check on the baby's growth. During the ultrasound at that appointment, the doctor told us Drew's belly was filled with fluid and substantially bigger than it should have been. Because we still don't have the test results back for the disorder, we aren't sure why. The fear was he would continue to accumulate fluid and it will go into different parts of his body. We almost decided to deliver at 24 weeks. But after discussing it with the doctors, we decided to leave the outcome up to God. No matter what the cause, the reality was this kind of swelling at 24 weeks is usually fatal. Whether we delivered or not, they put Drew's chances at about 1%. We chose enjoy the moments we have with him however long it was going to be. We later learned Drew had IPEX syndrome. IPEX is an X linked autoimmune genetic disorder that affects males. It causes a variety of symptoms including diabetes, chronic diarrhea, and eczema. Most males do not make it past age two without a bone marrow transplant. When we found out about the IPEX, we immediately made plans for Drew to receive a bone marrow transplant at 6 weeks of age. We meet with doctors at Children?s National Hospital in DC and prepared ourselves for a hard year. But we were optimistic because every ob appointment, Drew was doing well. At first the plan was to deliver at 34 weeks, but the swelling was decreasing and everything else was going well so we made plans to deliver him at 37 weeks. We were estatic to have made it to "full term". The week before his birth, we were ecstatic to learn Drew had more than 20 perfect matches for bone marrow.
Drew was born by C-section on Wednesday September 19th. They had the NICU in the OR and were prepared to take him immediately to the NICU. After he was born, he was doing do well they decided he could room in with us. For two wonderful days we got to hold him and love on him. He got to meet his big sister who was thrilled at his arrival. I fell so in love with that little boy. We were so happy that things were going well. But the doctors got concerned when he never had a bowel movement and continuously spit up large amounts after eating. On Friday night, they admitted him into the NICU to observe him. They did X-rays and determined he had a bowel obstruction. Drew was scheduled to have surgery on Saturday night. We were hopefully that after the surgery, his bowels would be fixed and he would only have a week or two long stay in the NICU. When the surgery lasted 2 hours longer than it was suppose to, I knew something wasn't right. The surgeon came into talk to us and was sad to admit he didn't have good news. Drew did have a bowel obstruction that was fixed. But then the surgeon looked at the intestines to make sure they were working right. When he opened Drew's intestines up, he couldn't find the openings. His intestines are completely solid tissue. No food or nutrients can get through them. Unfortunately you can't live without intestines. The doctors had never seen this before and started looking into what our options were. There were not many. The doctors think his intestines issue is completely unrelated to the IPEX. In order to survive, Drew would need a bone marrow transplant and an intestines transplant, which had never been done together before. They spent five days calling the best pediatric hospitals in the nation. During the meantime Drew was in the NICU. They had inserted a tube in his stomach so that the contents would have somewhere to go. He was receiving TPN which is a solution similar to Gatorade with everything in it to keep him alive as we made plans. On Friday September 28th we had a long meeting with four doctors, two nurses, and a social worker. They went over two very different options for us. One was to take Drew home and make him as comfortable as possible for however long that would be. I could nurse him so he would not be hungry and they would give us pain medicine to make sure he was comfortable. The second option was to do the bone marrow as scheduled. After that we would keep him in the hospital on TPN until the age of two. At that point, his name would go on the transplant list for an intestine. Given his age finding a donor would be difficult, but even if we got lucky an intestines transplant is a very hard procedure. TPN can only be given in 6 main veins. If those veins get an infection, they can no longer be used. Once the 6 are gone, TPN can no longer be given and there is no other option. This option would be a long and very painful road for Drew. We knew that God was telling us to go home with our baby and let him enjoy his sister and family.
We had a wonderful few days. We celebrated Christmas, was visited by Santa, got Drew dedicated at church, visited the pumpkin patch, and spent lots of time getting baby cuddles. Drew was home with us for 6 days when he passed away surrounded by family at 15 days old. I miss him every second, but through the facebook page I made during our hospital journey (Prayers for Baby Drew) he touched so many people, many I have never met, and that has helped tremendously. I am so happy to find a place where people understand and have been through this.
This discussion has been closed.
Re: Introduction...
I am so sorry for the loss of your Drew. I know all too well what it is like to have to make heartbreaking choices for your baby and I am so sorry that you had to go through this as well.
You sound like an amazing mother who truly did everything that you could for your sweet boy.
It is so amazing that in his very short life he seemed to have touched so many people and his is continuing to do that today.
I know that no mother wants to find themselves on this board but I hope that it brings you much comfort and support like it has for me. Please know that you aren't alone and there are so many amazing people here on this board that really understand.
I wish I could give you a big hug in person.
I am so sorry for the loss of your sweet son Drew. We are all here for you if and when you need us. Hugs my friend!!
Heather
BFP#1 - 11/27/09 EDD 8/5/10, DS1 arrived 7/24/10 via emergency c-section.
BFP#2 - 6/18/12 EDD 2/23/13, sweet baby girl born sleeping on 10/4/12 at 19 weeks, 3 days.
BFP #3 - 1/18/13 EDD 10/1/13, natural mc on 2/2/13 at 5 weeks, 4 days.
BFP #4 - 8/29/13 EDD 5/12/14, our sweet rainbow, DS2 born 4/29/14 via c-section
The day the Bump died - Jasper is wise
? to Loss+M/PL+TTCAL+PgAL+PAL
PgAL/PAL welcome