I'm a husband and father of one son with gastroschisis. My goal is to help other dads cope with this situation.
So you’ve been an excited set of soon-to-be parents for a couple of months now. You’ve been anxiously awaiting that ten weeks-ish milestone when your little one is more than just a blip on an ultrasound and a tiny heartbeat "bump-bump"s out of the monitor. Maybe it’s the first time you’re finding out that you’re pregnant. Or perhaps you have four other children waiting at home. No matter what the situation is, it’s one of the most powerful moments in your nine month journey towards childbirth.
But before you can get in the car and go home; before you can take those barely discernible pictures and glowingly share them with your friends and family, the doctor needs to speak with you. Unfortunately, something has shown up on the sonogram. It appears a small bit of your child’s intestine has made its way past the abdominal cavity before it could close completely and is now floating into the amniotic fluid. Right about now it feels like someone with a hand of ice has gripped your chest. Fear, confusion, and a dozen other emotions whirl in your head along with numerous unanswered questions. It’ll take a few tries to say it right, but the reality is still there. You’re a gastroschisis dad. And with that realization come a lot of responsibilities that you weren’t prepared for.
When my wife and I were told that our child was being diagnosed with gastroschisis, it wasn’t so much confusing as it was crushing. Six months prior we had lost our first pregnancy to an ectopic miscarriage. Now, we were being told there was something wrong with this pregnancy. The “what” or the “why” didn’t interest us much at that point. They could have invented some Dr. Seuss-like word and it wouldn’t have mattered. All we heard was that SOMETHING was wrong. We were both just a scared, blubbering mess to start.
If you are reading this, then odds are you have passed this stage in the acceptance of your baby having gastroschisis. But let me stress, as a gastroschisis dad, one of your most powerful weapons will be knowledge. The mother of your child is going to want to know what is going on. And even though every doctor, nurse, and specialist will try to cram more statistics and reassurances than you want into your skulls, there won’t be anyone she would rather hear them from than you. Do your reading. Know your facts. Learn to separate truth from a myriad of outdated and misinformation that is out there. For example, we were told that gastroschisis affects roughly 1/5000 pregnancies. Unfortunately that’s an outdated figure. The truth is, today it is closer to 1/2500 pregnancies. Still rare, yes, but the instances of gastroschisis have nearly doubled over the last 20 years. Despite increasing awareness of this defect, the causes are still a relative mystery in the medical community.
This isn’t a scientific article. I’m not going to spend time quoting theories and studies and thousands of research articles already written on gastroschisis itself. The fact is, HOW it happened is irrelevant now. What you do with the situation is what’s important. I remember being frustrated and angry when our doctor followed up the “1/5000” figure by trying to console us with the statistic that gastroschisis babies have a “95% survival rate.” To our doctor, I’m sure it was meant to be comforting. To me, I was just told that my son had a .02% chance of ever having gastroschisis in the first place and then a 5% chance of not surviving through childbirth. That was not a calming statistic for either of us.
This brings me to my next point. Be the rock. Doctors try their best to comfort, and God bless them for it. But their true job is to do everything they can to make sure you have a healthy baby. If you are just as emotionally distraught as the mother (and more than likely she will be), then you aren’t going to be much help. Don’t get me wrong. I’m not saying, “Suck it up and be a man.” Going through a pregnancy with gastroschisis is an unimaginably stressful experience. But what you must accept is that between the three of you, the child’s health and safety is paramount, the mother’s well-being and safety is a close second, and you are decidedly in third. So instead of being the “least important,” focus on being the most important person in the mother’s life. Be the one she leans on, the one to make her take a deep breath and believe that everything that can be done is being done. Your confidence and compassion will mean the world.
As a quick side note, consider this. Be open. Your parents, your friends, and practically anyone who hears the word "gastroschisis" is going to want to know what is going on with your baby. This won’t be everyone’s cup of tea, and I understand that. You may feel this needs to be a more private time for you. But for us anyway, being open and talking about what we were experiencing was a great way to blow off some of the stress. It became easier to accept and live with the more we talked about it. Something to consider.
I know that I felt lost for the seven or so months we knew about our son’s gastroschisis. When your child skins their knee, you put on a Band-Aid on it. When they have an upset stomach, you rock them to sleep. But when you have an unborn child that is suffering a defect like this and you have no power to help or change anything, it’s hard not to just run around in circles screaming. But as a gastroschisis dad, that’s not exactly the best option for you.
If knowledge is your weapon, and strength is your gift, then your best quality has to be patience. Not only for the mother, but for yourself as well. You’re in for multiple visits to the specialist, countless hours spent on a baby monitor, and scheduling appointment after appointment. And it will only get more hectic as you get closer to the due date. My wife and I went to our Perinatal Center twice a week for six months. They need to track heart rates, keep accurate measurements of the exposed innards to make sure there is no swelling or shrinking, etc. Every Monday and Thursday for half a year I was convinced it would be the day they would tell us that something was going wrong. That’s hardly any way to live. You need to find within yourself an untapped reservoir of patience so that when it is time to deliver, you’re not just a worn-out husk of a father.
And delivery WILL come. No matter how impossibly far off it may seem at the outset. They may need to take the baby early. They may wait all the way through a full term. It all depends on your little one and how they handle their home in the womb for that final trimester. There are a lot of times when the womb is no longer providing the best environment for your child to continue growing. Whatever your delivery situation, this is when fear hits its fever pitch. But rest assured that your baby is tougher than you can imagine. They will fight past any reasonable level just to survive. Believe me, this is when you have to trust everyone at the hospital to do what they are trained to do.
We had managed to reach 38 weeks, and our son never had any problems on the monitor or any issues with his intestines swelling. But he had stopped growing, so it was time. Our specialist scheduled us for an induction. Our plan was to hunker down for a few days while the induction ran its course and give birth to our son. He, however, had other plans. He managed to get the cord around his neck the night we got to the hospital. In addition to that, his stomach was starting to find its way out of the opening in his abdominal cavity. After having resolved myself to a weekend complete with ice cubes, breathing exercises, and an exhausted and cranky wife, we were instead being rushed to emergency surgery two hours after check-in. My son was delivered by C-section at 11:52pm. He wasn’t breathing. He was purple. Mercifully, he was easily resuscitated. Even at full term he only weighed 4 pounds and 14 ounces. We each were only able to see him for a moment before he was rushed off to the NICU.
As stressful, painful, and nerve-wracking as a gastroschisis delivery is for you, it is doubly so for the mother. In a normal delivery situation, the mother gets to hold the child, sleep with the child in the same room, breast-feed if they so choose. My wife’s birthing experience consisted of a quick kiss on the forehead. The next time we saw him, he had tubes and monitors and a sack covering his intestines. He was fed through an IV. He was chemically paralyzed so he wouldn’t damage his intestines by moving. Our son was in constant pain for the first month of his life. I felt twinges of agony every time I saw the look of longing on my wife’s face. How she wished she could just pick up our son and hold him and make things better. This is when you need to take all of the attributes you have accumulated so that you both can make it through this difficult time.
We had about 8 weeks of daily visits to the NICU. My schedule was to wake up, go to work, go right to the hospital, spend a few hours there, come home and have maybe an hour of daily chores before passing out into a fitful sleep before starting it all over again. This is a tough lesson to learn, and an even harder one to accept. Make time for yourself. It sounds harsh and selfish, I know. There wasn’t a moment that we did not want to be by our son’s bed. It’s normal to feel that way. But the fact is you need to be ready for your little one to come home. They are going to need a lot of care and careful watching. Turning yourselves into zombie parents won’t do the baby any good. Revisit a hobby you didn’t have time for the past nine months. Go out to a movie. Make an effort to feel human again. Trust me; it pays off more in the end than you can know now.
I’m not naïve. My wife and I were lucky. Our son had a single surgery one week after he was born. His intestines were completely intact and the hole was small enough to sew up without needing any skin grafts or additional cosmetic work. He had some feeding and digestive issues at the beginning, but now he’s a garbage disposal. He is a perfectly healthy, happy child and we are infinitely thankful every day for that. A lot of gastroschisis parents are not so fortunate. I think back to how scary and stressful and taxing of an ordeal our pregnancy was. And I feel genuine empathy for the parents whose situations are not as favorable.
As a gastroschisis dad, if there is one crucial thing you must learn above all else, it’s to focus only on what you can control. You will be able to do a lot of good, or cause a lot of damage. It’s all a matter of how you channel the energy you expend. Spending the entire pregnancy being angry, or depressed, or confused will be about as beneficial as you would expect. Despite the circumstances, and regardless of the outcome, this experience will define a large part of who you are and who you will be. It’s up to YOU to make sure that you have a hand in making the man that comes out on the other side of this journey.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Nelly on September 27, 2016:
Thank you for posting this. You described in words how our life is now. Our son have been in NICU for 20 days. Your words have given me more strength to continue pushing forward. Thank you also for the pictures☺️ I see my son in them. God bless you and your family.
Leigh on September 07, 2016:
Thankyou for posting this. My wife and I are going through this now, it has been really helpful to hear your first hand experience and journey. I will stay positive for her and hope for a positive outcome.
Melissa Hendrix. on June 05, 2015:
28 years ago next month in 1986 i was born with gastrastisis and was life flited from livingston to houston almost diad. But i made it. I never looked at pictures of yalls story and it was time for me to look and for the first time in 28 years i don't feel alone i will keep your story in my heart forever. Your baby will be a strong and determined for a great life..
Diana on June 08, 2014:
Great article! My little boy was born with gastroschisis almost 9 years ago and now he is a super healthy, happy and active little boy! My husband and I went through a lot of the same heartache you went through. We were fortunate enough to spend ONLY 4 weeks in the NICU with him, after four weeks he came home and that was the happiest day of our lives. The best to you and your family.
Alysa on March 17, 2014:
I'm reading this, in the hospital, with my 22 month old daughter born with Gastroschisis, this isn't the first time we have come back to the hospital because of Gastroschisis. When she was 6 moths old we came here after 2 days of her vomiting up Bile. 4 days later, they sent us home because nothing appeared to be wrong, and she managed to have a bowel movement. This time, after a day of her being sick, not puking up bile, let alone every 30 mins like she did when she was 6 month old, but obviously showing something was wrong, and more than just the flu. We've been here for 4 days, yesterday they opened her up, pulled out her intestines and had to untangle them, and remove scar tissue from them that was causing blockages, and also took out her appendix, that had migrated from where it should have been (near the hip area) to the oppsite side of her body just under her rib cage. I guess it is common for Gastroschisis babies to be back in the hospital between 1-2 years, because normal babies' intestines naturally attach to the body while they are forming in the womb, but our babies are different, since theirs were moving in and out of their bodies, theirs aren't attached inside; hence how my daughters got tangled
I hope that yours hasn't and wont run into this issue, as it is difficult to think you have a healthy baby finally, and in the blink of an eye they suddenly become sick, and i litterally mean that. It was in the blink of an eye, she was playing with her toys on our plane ride home, and suddenly looked over and me, and wanted to lay down, couldn't get comfortable, screaming at the top of her lungs, and baring down on her tummy, just below her scar from the original surgery.
Devon on August 01, 2013:
I am reading this as I sit in the hospital at my gastro-daughter's bedside. Day 139. I have 4 kids at home, 4 hours away. Reading your story gave me comfort and strength to continue and belief that we will get through this. Thank you for writing. Congrats on your amazing little man! Xx
Abby on November 13, 2012:
beautiful, thank you so much for sharing. i'm 25 weeks with my first, and he's a little gastro baby too. can't wait to show my husband, and your son is beautiful!
Allison on November 12, 2012:
Thank you for your beautifully written and informative account. As a gastroschesis mom-to-be, I learned more from your narrative than from many medical accounts. No one else has been able to explain what it is like to have a baby in the NICU, especially. If you have time, I would love to read a post on more details of your post-birth experience and what it was like when you brought your son home. How did your baby get from the frail little being with tubes all over him to the adorable, alert little rascal he seems to be in your later pictures? Best of luck as you move forward!
Katie Murry on September 26, 2012:
Beautifully written. My gastro baby is now six years old but I can still remember all the emotions that you wrote about as if it happened yesterday. Thank you for sharing. Your pictures are beautiful.
Mom Kat from USA on September 24, 2012:
I couldn't imagine going through this. You are strong, brave, and blessed. I am so happy for your family that your son is doing so well. This was very well written. Thank you so much for sharing this with us.