Tuesday, June 30, 2009

Genetic Counselor

It seems like the million dollar question lately is "When are you going to have another?". I take issue with this particular question...I mean, it took us 2 years to get pregnant with B, and then look how sick he was. Plus he's only 5 months old!

When B was in Children's I asked three of his neonatologists if PPHN was genetic. All three told me no, and that any future children didn't have a higher risk of developing PPHN. So when I had my OB appointment two weeks ago, I asked him for the name of a genetic counselor. He asked why and I explained that I want to know if there is something wrong with me that caused this. We talked for about 15 minutes and he finally convinced me that there was nothing wrong.

So I think I've given up on the genetic counselor. Plus, I don't even know if there are any in our area. Do any of you know of anyone who has had a baby with PPHN and gone on to have a healthy baby afterwards?

21 comments:

Kelly said...

I know! I've said many times that Harper is plenty for us but now I'm leaning towards waiting until her first birthday and THEN we will think about it. ha! :-)
I don't know about PPHN - and I know with Harper it was a total fluke that she got so sick but it still scares me to have another one. But I think you will be fine!

Heather said...

Jenna- This is totally one of my biggest pet peeves in life-people asking questions (I know they don't MEAN to be insensitive, but they should think...) about "When are you having another one?" or "When are you going to have kids?" and they don't think about what might be going on that they don't know. GRRR!!! Right after I had Connor when people asked, I think I said "he's only a few months old!" or something like that. I wanted to scream "Mind your own business and stop challenging my contentment!!!" Then I almost lost my mind when we were trying to get pregnant with Avery Kate and people kept asking.

Sorry for the vent, but I really do hate that question! :) Trust God for what comes next for your family....He has a wonderful plan, I know!

Creekmore's said...

Don't worry about people asking you that question! It is one that I NEVER ask after having fertility issues with both my boys and seeing a friend go through it the past year. She has had a miscarriage and a tubal pregnancy and people will say things to her like, "so what are you two waiting for." It's very hurtful to her. And while we were TTC people would say the same kind of things and I would think to myself - I'm trying and I can't do anything about it. We don't tell anyone when we are trying to get pregnant, we just feel it's a private matter. This is truly one of my biggest pet peeves! It's no ones business except for you and your husband - not even your parents. Now we are all the time being asked if we're going to have a third and we haven't really decided. I just tell people we don't know and they won't know until we announce we are pregnant or made the decission to do something to prevent it. We have friends that have said 5 years since they were married. NO matter when you ask them, they say 5 years. People have stopped asking! LOL Questions I don't ask - When are you going to have a baby? Are you going to have another one? Isn't it about time to have another one? No, No, No - if they want me to know, they will tell me!

Ann said...

I have no answer to your question on PPHN. But I totally want to chime in about the "When are you having another question." That question bugs the heck out of me. We have two wonderful little boys who we love dearly. People keep asking us when are you going to try for another or when are you going to try for a girl or I'm sure you're going to have another so you can try for a girl. I HATE all those questions. My husband works for a non profit private school so another child is financially impossible for us right now. But more than that the questions about having a girl to me imply that there is something wrong with having two boys and not a girl. GRRRRR! Anyway sorry to vent but I totally agree that people don't really have any business asking!

Angela said...

Jenna,
I had the opposite issue--3 healthy kids (including twins) and the last child had PPHN. She's doing very well now, but it was quite surprising to have a NICU baby after having full term twin boys and another little girl who went her first 3 years without a sick child appointment!

With 4 kids, we also get the opporsite question...you aren't having any more kids are you?

Just goes to show people will ask no matter what the situation :-)

starlightmommy said...

I found your blog right around the time that you had B....I don't know you but I love your blog. With that said let me chime in here.

I have two children. A boy and A Girl they are 21 months apart. People will tell me "well you have your boy and girl you can stop now" or people will say "got one of each, better not go for a 3rd college is too expensive' or "better wait a while before a 3rd comes along with the two close together." and these are just examples.

It really blows my mind what people have the nerve to say. Like my son who could not breast feed but for 5 1/2 months I pumped and fed him my milk and supplemented with formula. A lady in another town (we were traveling) at Taco Bell looked at the person she was dining with and said to her directly "new parents these days....bottle feeding what a shame" and I about came unglued. 2nd....A man came to me in the mall where I was completely covered breast feeding my daughter and says "ever heard of using a bottle" and again I about came unglued. People have no clue what your situation is.

Anyway my point is people don't think before they speak. I know only about PPHN what you have blogged about so I know nothing about it genetically.

Follow your heart.

kim_brough said...

A former youth minister of mine had a response that would make people quit asking:

"Don't know, but we're having tons of fun trying. All the time".

Ha. Hey, they were married. :-)

Amber said...

Oh my goodness. I take issue with that particular question too!! I have 3 girls, and my oldest was only 3 when my 3rd daughter was born (she's 7 months now) and NOW the question is 'you MUST be done, right?'

A couple I know had been married for a while and got asked 'when are you having kids' a lot. The husband often responded '10:00 tonight in our bedroom, you wanna come watch?' ;) That usually made people think that their question was maybe a bit personal and there was more to it then just assuming everyone can & should have kids.

mrosev14 said...

I can understand why people asking you that question can upset you. I don't think people mean it to be offensive, I think it is just one of those natural questions you ask someone once they've started a family. I'm sure it's good hearted.

From what I've read about PPHN it isn't genetic at all, but I can understand why you would be scared about having another. Being in the NICU for any length of time is scary, especially for how long you guys spent there after having fertility issues. :)

Debbie said...

I don't know anything about PPHN, but I am so glad he is doing so well. My daughter just had a baby and he has a heart defect. We have been told it was not a genetic thing, which I am so glad, but I know my daughter worries about it happening again. We still have two more open heart surgeries to go through, so it will be several years before they think about another one, but I hope it doesn't stop them from having more. She has always wanted at least 2. The best thing is to give it to God. Debbie

Jen said...

I have decided that I could have 15children and people would still ask that same question! It does not matter where you are in your 'phase of life', people will always have a question or comment for you. Encouraging, I know!! :)
I don't know about your PPHN concern, but I am sure your doctors would have advised otherwise if there was a genetic link. My advice for you is to ENJOY Braden NOW and don't worry about the 'next one' yet. It goes by SOOOO fast -- I know you have probably heard that a thousand times, but it is so true! After losing twin girls and then having a healthy baby girl 11 months later, it took me until she was 4 to decide that I was ready for another one. We had a healthy boy and thought we were done, but God had another plan for us...3 years later another beautiful, healthy baby girl! Whether Braden is your only or you end up with more, you will be fine. Best wishes!

Watkins Wackiness said...

I enjoyed reading all the comments about people asking that nosey question!! I have been married for only one year and people started asking that question even BEFORE we were married!! Now we have been trying for quite some time now with no luck and I get so tired of hearing that dreaded question!! IT IS TOTALLY A PRIVATE MATTER AND YES ITS NOT EVEN YOUR PARENTS BUSINESS!! My mother thinks it is her RIGHT to know because she is MY mother and we have even had some knock-down-dragouts becauase of the issue! I politely asked her if someone asks her if we were trying to tell them that she doesn't know and she completely flew off the handle!!!! I'M TIRED OF IT!! I've just started telling people that we practice alot.... LOL Which that's pretty fun too!

Gotz Family said...

Okay I think PPHN is more related to the C-Section than being genetic. When a baby is born via C-Section the fluid doesn't get squeezed out like it does when you deliver vaginally. At least this is what they told me when my youngest was born and hand PPHN. My oldest was C-section and had to have oxygen after birth and stayed in the NICU for 5 days. My middle child was VBAC and she had no problems. My youngest was born 6 weeks early and was C-Section and was in the hospital for a month exactly (it will be 2 years on the 3rd of July that he has been home from the hospital).

I think it is rude to ask when they are having their next child or when they say You aren't having any more kids are you (which I hear frequently. My mother in law tried to talk me into getting my tubes tied with my 3rd. It really irritated me so finally my husband talk to her, it was a little much everytime I saw her she brought it up.

Rachel said...

I've never had personal experience with PPHN, but I did find this link to some helpful info. http://www.persistent-pulmonary-hypertension-newborn.com/What-Causes-PPHN.html
Do some research and it may give you some peace of mind as you are considering adding to your family.

The Parker's said...

I just have to share this one about my mom.

She had 5 kids in 5 years. The oldest was born in 79 and the youngest in 84. I was number four in line, and my oldest brother was still 3 when I was born. To top it off, she always looked very young for her age.

One day, she had a guy come to the house to tune the piano and when she opened the door to let him in, she had 3 young boys wrapped around her legs and she was very obviously pregnant. He looked at her and said, "Don't you know what causes that?" She shut the door in his face and found somebody else to tune the piano.

People can just be rude and/or thoughtless. My husband and I got the, "So, when are you having kids? question even before we were married. I think some people are just teasing and others are just too personally curious.

I hope that story put a smile on your face. I'm glad my mom can laugh about it now, because I certainly do!

Alyson said...

My first was COMPLETELY HEALTHY, Where as my 2nd was born with SEVERE PPHN........My husband and I still plan on having another, but not for at least a few years.....Our little one just turned 1.....we still want to enjoy this time with him before we add anyone else just yet :0)

I think I've contacted you before....I am in a desperate search to find other moms with babies who were also born with PPHN.....I want to find out if any of their babies still have any lingering effects.....Not only from PPHN itself, but from being on an Oscillator, Ventilator, etc....

Our son was SOOOOO CLOSE to having to be put on ECMO, but thankfully, he wasn't......He turned around literally at the last minute....He was due to go into surgery that next morning and he started turning around the night before.......

Does your son still breathe heavy at all??? Does he have any reflux or feeding difficculties?? I think I read that he has silent aspiration....

Does he still see a cardiologist??? - Avery's final appt with them was earlier this month......and I couldn't be happier :0)......His heart is beautiful....So no more ECHOs or EKGs!! YAY!!!

Also, he just had his final x-rays to check his lungs and they are beautiful....They were still a little hazy up until he was about 6months old.....

Avery still has issues with reflux and FTT (failure to thrive).....but that's it.....he is still reaching his milestones....

My doctors and Avery's pediatricians both reassured me that PPHN is very RARE (surprisingly).......At Avery's ped's office Avery was ONLY the 2nd baby out of over 13000 patients to be born with PPHN at full term.....They put me at ease with having another baby and the risk of PPHN being SOOOOOOO SLIM!! So I am confident that it will not occur again.....Although, it still will ALWAYS be in the back of my mind....

You know I feel that even though I didn't lose Avery......I still feel as if I lost those first few weeks of bonding......having him home and cuddling,....having him in my hospital room.....leaving WITH him, .......breastfeeding him from birth,.......having people come and see us in the hospital,.....Just being able to hold him when he was born......Seeing him awake........Those first coos and the first time they look at you.......being able to pick your baby up ANY TIME YOU WANT......(I couldn't stand having to ask if I could hold MY BABY)...relaxing with my family of 4.......I mean I cried every day for the first couple of weeks.....I'm sure you can relate...

We would definately love to have another one.......and even though we are a teensy bit scared, the joys that come from having a new little life totally outweigh anything else.....

Sorry I wrote so much :0)

Blessings,

Alyson

http://wellensfamily.blogspot.com

Heather said...

Jenna,

I have been a NICU nurse for over 9 years and have taken care of many babies with PPHN. It is not a genetic condition.

The Stairs Family said...

Hi Jenna- I don't know a single thing about PPHN, but I read this post the other day and then just a few minutes ago saw a commercial on TV for a local family attorney. It was asking for any mothers who had babies with PPHN or pulmonary issues and that had taken the drug Paxil before getting pregnant, to contact them because they had some kind of lawsuit going against the drug company. Basically it was saying that the drug leads to PPHN and pulmonary problems in babies, just a totally random connection I thought I'd share!

HeartSmiles said...

Funny..I also get asked the opposite question from time to time. When we had two (one of each) everyone would assume we were done having kids. Now that #3 is here, our friends, family, and complete strangers tell us that 3 is enough! I think we can make that decision for ourselves!

I also have a funny story. A friend and I took our kids to a fair, we were both pregnant with #3 at the time, and it probably did look crazy with 4 kids under 6 and 2 huge bellies. But an old man walked up to us and said, "Holy cow, don't you know that something in the air causes that...it's your legs"!
Get it...your legs in the air?? Well we were appalle! Some people can just be crude!

Momma said...

I wonder the same thing and I can certainly understand the fear of going through a pphn nightmare again. Though I'd love to have baby #4, hubby is dead set against it.

My first 2 children were born with no pphn problems. And then Wyatt was so sick with it. What happened?

I was told that it is not genetic. I don't know...

Have you seen the new FDA video linking antidepressants to pphn?

Take care and God bless,
Melissa Leavitt

Leann said...

I had googled the same question. I lost my daughter this december to complications from pphn. She was not diagnosed in utero and we never got to bring her home. I am now pregnant and concerned about my current pregnancy. It is a very sensitive question and no one seems to have an actual factual answer.

Leann

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