For those of you who knew of your baby's CHD before birth

Rachael - posted on 03/11/2009

Thank you all for your comments so far. You have all been helpful and given us hope. Since I started this thread, I feel like I can update you all on our situation.
I'm now almost 30 weeks, and Luke is still strong and active most days. We saw the fetal cardiologist again today and she reported that there is no fluid around his heart which would put him into distress and cause us to have to deliver early. We have breathed a huge sigh of relief knowing that he has passed the 28 week milestone and now has a good chance of survival outside the womb if he needed to be born early, increasing every day. One immediate concern that we have is that his enlarged heart may be hampering his lung development, but our Maternal Fetal Specialist (MFM) says that it's too early to tell how well his lungs are developing.
As I told Maureen privately, we've begun to operate on hope now instead of doubt, and that has helped us tremendously. It has helped to focus on the resources we do have instead of the knowledge we don't. We have been plugged into a program at Medical City Hospital Dallas called FACT - Fetal Anomaly Care & Treatment which gives us access to several medical professionals who will help Luke from the moment he takes his first breath. It's been wonderful having a coordinator who I can stay in touch with to make sure everything is being prepared for us and everyone is on the same page.
My new OB - we had to switch because my previous OB (who I LOVED) could not deliver at Medical City with the Level III NICU - said that she wants to induce me at 39 weeks to make sure every doctor is there that needs to be present. Which puts the date at May 18. We decided to have our baby shower for Luke on April 4. My husband and girlfriends and I are planning the nursery and getting ready to paint! I'm not sure why, but the decision to paint the nursery has been a big one for me and my husband. We're operating on the assumption that we may not get to bring Luke home for awhile after he's born, but that we WILL get to bring him home.
I still have bad days and sad days, and days when I'm jealous of all the moms who get to hold their perfect babies right after they're born, but most days I'm okay, and some days I even feel good. I know this is from the power of prayer, the power of the Holy Spirit working in our lives, and because of our family, friends, and internet friends who always have something encouraging to say.
Again, thanks for the inspiring messages, and I hope others feel free to continue to post!
Blessings,
Rachael

Amelia - posted on 03/11/2009

We were diagnosed with HLHS with our first child at 19w1d. Once we got the amnio results that showed he would be eligible for the surgeries, we were told to treat things as normal. HLHS is one where the baby usually grows normally and is fine until just after birth. So we took our birth classes, as we were told I could plan to have a normal birth (even though it didn't happen due to heart rate drops). We had a baby shower at 35 weeks. (Some people wanted to wait until after the birth to see if he survived, but I felt that was just too depressing and wanted to have the shower and assume he would.)

I know that the last half of the pregnancy was horrible emotionally. At least I knew he was going to survive in me, so I wanted him in there as long as I could. His PDA started to close and his condition worsened within 12 hours of birth, so he was ventilated then. His first surgery was at 4 days old. He has now had 4 heart surgeries and multiple other surgeries and is doing well.

This may sound kooky, but if you can, plan to pump breastmilk for your little one. I found that I felt helpless when the doctors and nurses were doing all they could. This was the ONE thing I could do and darn it, I was going to do it well. I pumped for him until his second birthday, when I dried up since I was pregnant with my second. My son never could take the breast and was NG-tube fed for 6 months, but many doctors said he was the healthiest hypoplast they'd seen. I think it was the breastmilk, personally. It was the only thing I could really give during those first 4 weeks in the heart unit and then another two in floor recovery. So plan to do your research and get ready to pump. That's my best recommendation. Find something you CAN do to help your little one, something that no doctor can.

Ruth - posted on 02/24/2009

Hi Rachael,

While my situation is not exactly like yours, I also found out ahead that our unborn son had a severe heart defect, tricuspid atresia, and would require open heart surgery right after birth.  He has been through 4 open hearts (3 planned, 1 emergcy) and is currently doing great, thank God.  Your case is very particular, as I know Ebstein's is very severe and can result in fetal death.  Through my journey as a "heart mom" I've come to know a couple moms whose children have Ebstein's and were told the exact same thing as you in terms of their unborn child's chances of survival to birth and there after.  I'll try to get one of them involved with this group, as she has just joined FB.  As I read your questions, it struck me how very similar your situation is to hers.  Please feel free to message me directly if you don't hear back.

And while I know its hard, try to have faith and enjoy your pregnancy.  You are doing a fabulous job taking care of your baby.

Maureen - posted on 02/18/2009

Hi Rachael, This is my first post on this board.  I am not in your exact situation but felt compelled to respond to your post because it touched my heart.  I am currently 24 weeks pregnant with my 2nd child.  My first baby, a girl, had a VSD which eventually closed on it's own.  This baby, a boy, was diagnosed with " undefined issues" at 12 weeks.  For 8 weeks I lived on the up and down roller coaster that I'm sure you are on. 

At first, back at 12 weeks, I put away all of my maternity clothes away.  Even though my regular clothes were a little tight at the time, I was afraid to "move forward" with my pregnancy.  I had additional tests (CVS, AFP and more) and scans. By 15 weeks I had made the decision that this baby is in God's hands.  I'm not trying to get preachy, it's just how I dealt with this very hard situation.  The Doctors for most of my pregnancy kept giving me a different diagnosis every week, each scarier than the next.  I found that they really don't know it all.  The only one who I could turn to for strength is God.  I was told that my baby wouldn't survive and if he did he would never be "normal".  I decided to pray and just hope that God would give me a miracle. 

I went ahead and planned for the birth of my baby (buying a car seat, a crib, clothes, etc).  I tried to stay positive as much as possible because it's the only thing that I have control over and I know he can feel it.  At 20 weeks, my son was diagnosed with severe Pulmonary Stenosis and Tricuspid Valve Regurgitation.  The right side of his heart is really having trouble but I have been told now that he will require OHS but should be ok after that.  We still have a long road ahead of us but through faith, love and staying positive, I know we will make it. 

I hope my story is helpful to you in some way.  My message is to stay hopeful, stay positive and pray to a higher power if you feel comfortable doing so.  I'm not sure how I would handle losing my baby but I am planning for his life, not his death.  If God takes him, then I will find a way to deal with it then. For now, I am putting every ounce of energy that I have into staying positive, hoping and praying.  You and your baby will be in my prayers.  Please feel free to email me if you want to talk.  All the best. 

Megan - posted on 02/17/2009

Hi Rachael, My name is Megan and I'm 30 wks pregnant with my second son, Caleb. We learned at the 17 wk ultrasound that he had cardiomyopathy and that his heart was also incredibly enlarged. We were referred to pediatric cardiologists for a fetal echo within the same week and learned that his heart appeared somewhat better, however the damage was already done. They have diagnosed him with a variant form of hypoplastic left heart syndrome. The doctors at first told us that they were not sure that the baby would survive till term, now they believe that he will...It's just the question of how he will do once he is born. He will have open heart surgery within the first week of his life, and then will need 2 others before the age of 2.



I completely understand your feelings. I myself have been going through the different stages of grief. I'm very positive some days, and believe that everything will be alright...and then other days, I grieve the delivery that I thought I would have and the healthy baby that I had expected. I also think about what I would need to do to prepare myself if he does not make it. Right now, I'm just trying to enjoy my pregnancy, despite how scary this all is...I have found that my faith in God and my strong family support system has helped a great deal. I have also connected with some families through facebook that have gone through similar experiences, with has helped me as well.

I hope this helps. My thoughts and prayers are with you.