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I'm 26 yrs old pregnant with my first baby
I went into the OBED for a problem I was having they did an ultrasound and sent me to a specialist at that time I was 18 weeks and 6 days I was so excited to find out I was having a baby boy named AUSTIN MEKHI .well my joy soon turned to turmoil when the doctor came in to give me the ultrasound results. She then told me that my baby had CHD and he had only deveIoped 2 of the four chambers of his heart.i had no idea what that was, in fact I had never heard of it. I'm so devastated that this is happening to my son. I'm scared because things got so serious so quick. I don't know what I'm facing or what to expect please comment will he really need a heart transplant one day? I don't make that kind of money to be able to pay for it I'm so lost please any advice will help
AHAASAKatie, December 3, 2018 9:56am EST
Thank you so much for coming to us and for trusting us enough to share what is happening in your world. We have several CHD mom's who, I am sure, will respond over the next few days to you. I can give you the information we have on patient assistance and advocacy. Please look into the Patient Advocate Foundation (PAF) http://www.patientadvocate.org/ . The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors, and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. Another option is to contact PAN- the Patient Advocacy Network https://www.panfoundation.org for assistance and the United Way’s 211 is a good option as well http://www.211.org/ might be able to help as well.
I am the mother of a child with a joint connectivity disease and while her heart is not yet impacted by the Ehlers-Danlos, I have experienced some of what you are going through. It is scary not knowing what the future holds and how you will finance what your child needs. Please take it one step at a time, day-by-day and know that we are here with you to listen and support you as much as possible. Best Katie
basket57, December 3, 2018 10:47am EST
Hi Austin’s Mom. I’m so sorry to hear about what you are going through. My son Myles was also born with a rare CHD as well as a 2nd defect and it was not found during any of his ultrasounds.
Needless to say we had a lot of surprises after he was born. My son’s heart valves were reversed, he was unable to breath well (on his own) and he needed open heart surgery when he was 5 days old to repair it. (He’s 3.5 now and healthy as an ox)
My advise to you it to trust the Doctors. You have an opportunity that I never had, knowing of the defect well in advance of his birth. I don’t know what to expect now yet I can tell you that once Austin is born, Pediactric Cardiologists will give you surgery options and the Hospital will share information about financial needs or help understanding insurance coverage.
My son sees his Cardiologist yearly and will for the rest of his life. Don’t worry about a heart transplant just yet as modern medicine is absolutely amazing.
If my son was born 30 years ago he would not have survived. Advances in medicine over the years is what saved his life. For you, stay calm, keep relaxed during your pregnancy and know that the Dr’s, especially the Cardiologists, know exactly what they are doing.
I’d expect an extended hospital stay after he is born. The children’s hospital my son was transported to after birth allowed me to stay with him during his recovery. He was there for a short stay of 3 weeks even though it felt like forever.
My son was sent home with a feeding tube for about a month and I took over his nursing type of care.
He’ll likely not need any future surgery yet will go yearly for routine follow ups as he and his heart grows.
Love to you and your family
jlhyde85, December 3, 2018 11:24am EST
I have Tetralogy of Fallot, another kind of CHD that affects heart valves and chambers, and have had to have open-heart as a 2 year old and another one for heart valve replacement as an adult. Because of my open-heart surgeries, I was able to have a baby. I'm also a new mom with a 7-month old boy, Reyner. I love the name Austin! I can relate to what you're going through as a FTM and as someone with a CHD (we're called ACHDs, folks with Adult Congenital Heart Defects). The advice you've gotten so far is spot-on. Here's some of my own advice to add:
1) It's okay to just begin discovering these things now. While CHDs aren't common, a lot of research has been done on them, so many doctors out there are knowledgable. Definitely ask your OB-GYN, MFM and pediatric cardiologist all of your questions, and discuss your birth plan and postpartum care with them. Do they want you to come in for weekly monitoring? Extra ultra-sounds? Another fetal-echo? What do you need to know about your labor and delivery experience? The first day of life? If you're planning to breastfeed, should you pump in the hospital after your son is born because he may require intensive care? No question is too small or too strange to ask. Seek out second opinions if you aren't satisfied with answers. The advice for me was to have an epidural early on and to let the baby drop as naturally as possible during labor so that neither of us would get stressed out. Then I needed immediate heart monitoring while my son had an echo at 2 months to rule out any CHDs that couldn't be seen via ultrasound. So, you should ask your doctors what they envision is best for you and your son. Ask them also to connect you to any local or online groups so that you can chat with moms sharing your experiences. Little Heart Warriors is one such example: http://www.littleheartwarriors.org/
2) Does your hospital have a financial aid office? If so, you should ask to be connected to a financial aid advisor. You can do this by calling the phone number on a bill or asking the receptionist. Often, the financial aid office can help you apply for state or private grants to subsidize your hospital bills. This is what my parents did in the 80s to help pay for my baby bills, and this has helped my me as an adult as postpartum care for me involves a lot of echoes, MRIs and regular visits to my cardiologist.
3) Here's the AHA's page on CHDs. This is a great place to start once you have the name of your son's particular CHD. You can learn as much as possible, write down your own questions and bring them with you to your next appointment. http://www.heart.org/en/health-topics/congenital-heart-defects
4) Here is a list of the 10 best hospitals for CHDs in the US. Don't be discouraged if you don't live near any of them and can't easily get to the nearest one. You might call the one nearest to you and ask for a recommendation on where to go locally. If you do need to seek medical help farther away from home, there are private charities that can help subsidize the costs. The Ronald McDonald House may be one such organization: https://www.rmhc.org/ronald-mcdonald-house
5) If you need to find a daycare or nanny/babysitter, a good interview question to ask is how much experience the person has taking care of a child with heart defects. Are they CPR-certified, for example?
Definitely feel free to ask more questions! We are here for you and your family :)
Lyoakam, December 3, 2018 1:10pm EST
Hi Mama! Congrats on your sweet baby boy! My son Rory is now 5 months old. He was born with a rare form of CHD called Hypoplastic Right Heart Syndrome Pulmonary Atresia Intact Ventrical Spetum (HRHS PAIVS). Basically his right Ventrical wasn't getting proper blood flow causing lack of growth in his right vetrical (which allows blood to flow to your lungs). We went through something very similar to you where we learned of his heart defect in utero and although it was terrifying and my head was spinning in a million direction, we (like you) were very fortunate to figure this out before baby was born to research and get proper arrangements made for baby and you:). I am not sure what specific diagnosis your baby boy was given (CHD is a broad diagnosis). If you are unaware just call or ask your MFM or cardiologist to write it down for you at your next appointment (some are very confusing and hard to remember or even pronounce!) By doing this you will be able to narrow down your support network and get more specific answers to any future questions or concerns. For example I'm in several support groups and connect with other parents who's child specifically have HRHS PAIVS and I am beyond thankful for their input and experience. Secondly, you are def not alone in your financial concerns. I am sure we would all admit to having the same thoughts/fears. I am unsure where you are from but most states have a "Children's Special Health Care Services(CSHCS)" . It is basically Medicaid for your child only that pretty much every Heart baby qualifies for. Your child qualifies for it regardless of a parents income. It is a sliding scale and by this I mean you may have to just pay a specific fee if you make a certain amount of money but if you are like us with huge out of pocket deductible it is worth paying for bc it may still save you some in the end.This medicaid is a secondary insurance and will help cover anything your regular insurance does not. If you do have insurance make sure you request a "case manager" for you and your son. Most insurances have these for complex cases that way you are not always talking to a new person every time you call your insurance and they will be your biggest advocate😊. Your insurance case manager may be able to give you more info about the children's medicaid but you will not be able to apply for it until baby is born. You will hear more about it from the hospital social worker. If you don't for some reason- just ask them! Lastly, your babies diagnosis is new and his heart is still very small and developing. Just remember alot of things can (and will change) before he is born but they will never know EXACTLY what they are dealing with until he is born. I understand this is a scary concept but I tell you so you keep a open mind. These heart warrior babies are extremely resilent and tough. Every baby and their journey is different. This will not make your thoughts and fears any easier (esp while your pregnancy hormones are all over the the place!) But, know you are never alone in this journey and as a fellow heart mom told me when I was in the same spot you are, "it will be easy to want to become your child's doctor and try to constantly figure out what you think you can do to "fix" his heart, but all your baby REALLY needs is for you to be his mom". Love him and continue to enjoy this special time you two have together while he is in the comfort of your belly, bc this is the best he may ever be. And that is okay. There are many amazing doctors, medical staff and technology now for these kids and I hope one day you will be able to look back and help support another scared heart mom while dancing to Christmas music in your kitchen with your sweet warrior in your arms, like I am now!♥️ Stay strong Mama!
renshiwo, December 4, 2018 12:29pm EST
I'm so sorry you are dealing with this! I am also a heart mom of a 6yo with a different defect (Tetralogy of Fallot with pulmonary atresia). You've gotten some great advice from others. My two cents:
- Don't go crazy with Google. Treatments for heart defects are changing rapidly, and there is a lot of outdated information on the internet. Your doctor and care team are the best place to learn more about your son's specific diagnosis, treatment, and care. And I second what Laci said - be prepared for the diagnosis to change slightly after his birth. The doctors do the best they can with the images available to them, but most of the time a full, accurate diagnosis isn't possible until they can do more testing after birth (things like a cardiac catheterization).
- I also second talking to your insurance to get a case manager. They can help coordinate billing. It is worth keeping track of billing, even though it is overwhelming, because mistakes do slip through, which could end up costing you unnecessarily. It's also good advice to talk to the financial office at the hospital and to look into your state's CHIP or Medicaid program, especially if you are un- or underinsured.
- Put *your* care team into place, as well as your son's. This can be a tough journey emotionally, and it is so important that you are supported by people who love you, and often by a professional counselor or psychologist as well. It sounds like your son's diagnosis likely means a chronic condition rather than an intense, but complete fix. Many heart parents I know find that the emotional struggles intensify after their little one has stabilized with symptoms that are akin to PTSD. This is completely normal, so be prepared to ask for help for you once your little one is out of imminent danger.
My son was not diagnosed in utero, so we only found out about his heart condition after he was born. I remember that awful feeling of: how will I manage? I imagine that's how you may feel right now, too. If I could tell my new mom self one thing it would be this: all things are possible with love. It has not easy, but the love for my son makes it all so worthwhile, I wouldn't have it any other way. We can do hard things, and you are stronger than you know. Good luck, Austin's Mom.
MedicMom, December 10, 2018 11:24pm EST
Around this time last year, my husband and I announced our pregnancy with our first child. When we had our 20 week ultrasound in February, on my birthday actually, we received devastating news and were sent out of the office not knowing what to think. They insinuated that our little boy would have Hypoplastic Left Heart Syndrome, which in our opinion was about as bad as it gets. The weeks that passed until he was big enough to have a fetal echo done were agonizing. The result of the follow up was that things appeared normal but there were things that they couldn’t rule out and we would just have to do an echo on him after he was born. Well, things went pretty well for us and we ended up with a diagnosis that they believed would not require surgery. Then, when our son was a month old, we found out that he had another defect and we would be facing surgery. Total roller coaster of emotions and I feel for you. I wish I would have found a way to connect with others facing similar circumstances then.
I Googled a ton, my husband didn’t want to. I cried constantly and barely kept it together for weeks. People say not to Google but for me knowing worst case was essential, but my husband didn’t want to know. That has to be up to you.
Having an infant is hard enough without even throwing the idea of one or multiple heart surgeries in the mix. BUT, you will get through it because there really is no other choice. The thing that got us through was surrounding ourselves with family and other supportive people. We didn’t get through it gracefully but no one expects you to be graceful about something so hard. Give yourself permission to lose it every now and then because bottling up what you’re feeling doesn’t help you or the baby.
Good luck with everything, I wish you and your family the best. My little one is a shining example of the fact that things aren’t always as bad as they seem at the time. The things that you do for and can endure for your little one have no limit. You will persevere, too.
BL1970, January 31, 2019 10:15am EST
Hello, Hope for Austin!
All of the support and sugestions above are spot-on, ESPECIALLY the need for you to get a team of professionals to give you much needed emotional support. Any way you look at it, it is scary, especially for you two, and your soon to be special gift. Congratulations, to both of you by the way.
So, I'd like to give you my perspective on heart-related issues...
At two months old, I developed an aortic stenosis, way back in 1957. It would take three openheart surgeries over the next 15 years to find the right procedure to keep me going. I am now 61 years old and my "new" prosthetic aortic heart valve is still ticking, after 40years!
A little history lesson-
In 1968, before my first open heart, the odds of my survival were 50/50. I was in the hopital for six weeks.
Cell phones, computers of any kind, internet, email, microwaves, micro breweries? UH UH The best thing
after sliced bread was the rotary phone and EKGs the size of picnic tables. I kid not.
Every procedure to today regarding heart related issues, were only dreamed of. Cardiac care has absolutely skyrocketed in 50 years!
You are in great hands! It IS scary. As a child of 11, I was scared to death, but counselling? Who needed it? Of course we did, but no one ever thought about it.
So, in the stone age, there were no seat belts, car carryers, unleaded gas, the minimum wage was 1.60 an hour, gas was 50cents a gallon....
Actually, its fun to look back, yet the two other surgeries in the '70's were just as traumatic and emotionally difficult, very hard on me.
So, my friend, Hope for Austen has great technology awaiting him, even though it is of course unfortunate.
Peace and hope to you all,
Ken Levine BL 1970
hope4austin, February 6, 2019 8:58pm EST
Thank you guys for all the prayer and support I am currently 29weeks and we have our first appointment on Monday with the fetal cardiologist I will be sure to give you guys an update,
BL1970, February 7, 2019 8:13am EST
Thank you for the update, and please do keep me (us) continually updated. I am extremely grateful that such miraculous exist, and wish to give ongoing support for you and your baby miracle!
Thank you and all the best!
hope4austin, April 18, 2019 3:08am EST
Hey guys sorry it's been a while since I've updated. Bby Austin was born April 11th 6lbs 14oz 20 inches long at UAB hospital in Birmingham Alabama. He was then transferred to children's hospital. He is such a beautiful bby. We recently had his first procedure which was a catherization he did well and is still thriving.During this procedure they take pictures of the heart a sort of exploration surgery if you will.The surgeons determined that there was no surgical resolve which made my worst fear come true he will need a transplant he has a very high risk chd called pulmonary atresia w/ intact ventricular septum and coronary sinusoids. I'm holding up well it's really the wait for our transplant that I'm worried about because I'm more than confident that he will thrive with the transplant. Pray for my strength because this is a lot especially for a young first time mother like myself. I hate when they are doing different things and he just cries it like tears me apart not being able to do anything to help ease my sons pain. Very frustrating