While baby Arin has not joined us yet, I am 34 weeks pregnant, I am writing this post to thank you all for your posts as they have helped my husband AJ and I through some really difficult days. Our soon to be baby girl was diagnosed on Feb 18, 2011 with WHS and a large deletion. Still trying to figure out what that exactly means but will see the genetics doc in March so hopefully will get more information then.
I want to introduce our family as with this diagnosis came some life changing events for our family. We live at least until March 7 in Gering, NE and our hospital here will not be able to provide any of the care that she might/will need so we are moving to Newark, DE to my parents as well as some awesome children hospitals so she can receive the care that she needs. I was a nursing student at the University of Nebraska Medical Center’s College of Nursing until diagnosis when I put that on hold so I could concertrate on preparing for Arin and moving my family. I plan on returning some day! My husband, AJ and I have been married for almost 11 years and baby Arin will be our 3rd child. She will be joining big brother Aiden- 8 years and big sister Samantha- 15 months, both are anxious for her arrival.
While I don’t know what kinds of problems she will have yet with this syndrome we already know that she will be small, which is what caused the concern and lead to the early diagnosis. She is only projected to be maybe a little over 3 lbs at birth, currently at 2 lbs 9oz via estimates in ultrasound, but she sure can kick when she wants too!
Reading your stories has helped us realize that there are many different levels in this syndrome and that she will lead a happy life. I was to be induced on March 17th but with the move means a new doctor and he may wait a couple more weeks until I am 39 or 40 weeks as long as she continues to pass her twice a week neonatal nonstress tests. I do have one question in I have everything that I have read about the condition it talks about immune system deficits and they tend to get sick more often, would you recommend breast feeding to help with this? Or is a high calorie and protein formula better?
I look forward to posting more about Arin later and getting to know your children through your posts.
Brianna
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HI Brianna and family,
Welcome to the WHS family. My son Dylan just turned 2 on Feb 20th and was diagnosed with WHS one week after birth. Our journey has been rough at times but I want you to know that Dylan is a complete joy. He brings so much happiness and love to our family and I know that Arin will do the same for you. WIth regards to your breastfeeding question – I am a big breastfeeding advocate (being a mom and a labor & delivery RN) so I would recommend brestfeeding. Dylan was unable to latch on at the breast because of his cleft palate so I pumped milk for him for his first 9 months of life. I believe it was the best thing for him. Dylan has been very healthy with only about 3 illnesses so far in his 2 years(2 being ear infections and one a cold) – I owe it all to the breastmilk. In the beginning I would add human milk fortifier to the breastmilk to boost the calories but to be honest one thing that I have learned about Dylan and a lot of kiddos with WHS is that they are going to grow slowly no matter what. Dylan currently takes in about 1000 -1200 calories a day and is only 17 1/2 lbs. I would say do what is best for you and Arin. Good luck with the move and everything. I will be thinking about you guys. If you wish to contact me personally please do so @ kristyfisher79@yahoo.com and feel free to visit my blog @ http://www.ourlittledillpickle.blogspot.com
:)Kristy
Dear Brianna & family, our hearts go out to you as you prepare to parent Arin Rae. We know she will bring you much joy, and probably a few challenges. Craig was born at 4lb 12 oz, & I nursed him for about 15 mos. He was a little slower to latch on than my first two sons, and was in the NICU for 10 days till his weight stabilized & he gained for 3 days straight. We supplemented with formula till he was nursing well, but I don’t think I did after he came home. Since you asked, you probably nursed your other two, and you can probably nurse this baby, barring unforseen problems. I am also an RN who worked in NICU’s, & I believe the most important factor in nursing (aside from the unforseen problems) is the mom’s confidence. Believe that it may take more effort, but that you probably can. If it doesn’t work out, your baby can still do well. I have an old but excellent book called “You Can Breastfeed Your Baby…even in special situations” which I would be glad to send you. My email address is tombecr@comcast.net, & if you want me to wait till you get moved, I could do that too. We lived in Omaha for 3 yrs, but are back to stay in Northern Virginia. Know that you have many “friends” you haven’t yet met in the 4p- Support Group. I also have started a blog because I’ve written a book about Craig that I will soon publish, called “Craig Richardson: A Life Worth Living, With Disabilities.” Becky Richardson
Welcome Brianna- I also have a 2 year old (well, as of Monday!!) with WHS. Riley is amazing and such a joy to have in our lives. Riley also had difficulty with latching on, so I too pumped. My biggest regret was not being able to do it longer. My supply was gone within the first 2 months, but she had her best feeding and her best growth during those two months out of the last 24 months. We added a fortifier also to boost the calories from 20 cal/oz to 26 cal/oz. We used a preemie formula as the fortifier. Riley is now tube fed and a chunky 21 lbs, which is very big for WHS. She weighed 4 lbs, 5 oz at birth. Riley has been fairly healthy during the past 2 years. We really do not want to stop her from experiencing everything she can so we are out and about all the time. As a result, she has had a few colds, but no more than the average 2 year old. I think keeping Arin in utero as long as possible as long as things are going well will help as well as breastfeeding. I am excited to “meet” Arin and hear more about how great she is doing. We also keep a blog, it is private due to my husband being deployed right now so if you would like to read it, just send me your e-mail address to add. Please let me know if you have any questions, we are all here to help one another. otmomtoriley@yahoo.com
Hannah
Hey there!
My son Rheyn has WHS and was diagnosed around 10 months old. He’s 3 now and doing really well. 🙂
Like Dylan, Rheyn had a cleft palate when he was born and wasn’t able to breastfeed so I also pumped. He used a Haberman feeder bottle (the hospital gave us a bunch) and drank breastmilk along with some high calorie formula sometimes. I highly recommend breastfeeding. With both of my babies I had milk supply problems so with Rheyn I only pumped for a month but I do think that even that short time of breastmilk really helped him. He would drink the formula fine but when he was given breastmilk, he sucked it down!
I hope that your move and labor/delivery go really well! Lots of love.
Hi Brianna,
Welcome to our family~ you will find that there is an amazing support system here of parents of children with this very rare syndrome, and on the days when you may find yourself feeling scared or overwhelmed, we are here to help lift you up. My daughter Kaylee just turned a year old on January 16th. We were completely unprepared for the diagnosis because we had done amnio testing that had come back with normal results. I was beyond shocked when we heard the news of syndrome…and I will be honest~ there are still days when I worry about what the future will bring…but so far, life with WHS has not been nearly as horrific as what we had first feared when we researched it online. Kaylee has definitely been sicker than I would like for her to have been for her first year, but where I live in NJ, my doctors are also much more cautious and conservative when it comes to her care than they were with either of my older ones. If my son spikes a fever and they cannot trace it to a specific virus, they send him home with directions for Tylenol and chicken soup. If Kaylee comes down with the same virus, she is hospital-bound for a couple of days to ensure that she doesn’t dehydrate or lose precious calories. As the other moms have already explained, our babies do grow more slowly. At 1 year, Kaylee is only around 11 lbs (she was 4 lbs, 15 oz at birth); we will be putting in a feeding tube within the next couple of months to help her add calories to ensure proper nutrition and development. I did try to breastfeed right after her birth. I regret stopping; I was just so afraid that she would not get the calories she needed…putting her on the Neosure high-calorie formula with supplement eased my mind because I could judge exactly how much she would get each day, and I was too upset at the time (still in shock over the diagnosis) to pump exclusively.
I am excited to hear that you will be moving to Delaware. I live in NJ, and there is a close circle of moms who meet to get together regularly (every 3-4 months) who live in NJ/PA area, too. You will be only a couple of hours (give or take) from us, and we would love to have you and your family join us once the baby arrives. There will also be a regional get-together in June/July in the Hershey,PA area, so you would have the chance to meet lots of moms of kids with the 4p- deletion. It is one thing to read about the kids online, but quite another to see the children in person and celebrate their accomplishments. In our group alone, there are children who are walking, climbing, crawling, speaking words, etc. It means so much to have this kind of support and know that you are not alone!
If you are on Facebook, please look me up: Laurie Sedlazek-Hunter…the greatest means of daily support you can find is there. I will keep you in my thoughts as you continue in the pregnancy, and I wish you an easy delivery and much happiness as you welcome your little angel. xo
Brianna,
Our daughter Denise has WHS, she is 2 years old now. We did not receive the diagnosis until after she was 9 months old.
I tried breastfeeding her, but she would fall asleep on me all the time, so I started pumping. She was on breast milk until she was a bit over 8 months. The first couple months of her life she was gaining very well (a pound per month), but around 5-6 months she started throwing up frequently and the weight gain went down the drain. Since we didn’t have a diagnosis we thought she might be sensitive to the breast milk and switched her to formula.
I regret this decision till this day. I believe that breast milk is best for our kids’ underdeveloped systems – gentle on the stomach, full of antibodies, easily assimilated. I believe that if we had started Denise on the reflux medication at the beginning of her symptoms and not given up the breast milk she would have been growing better and stronger.
I hope breastfeeding/ pumping will work for you.
Good luck with everything, stay strong…
Mihaela
Brianna, I pray for you and your family as you get ready for the beautiful arrival of Arin Rae. Once your baby is here I feel you will know exactly what to do. I was induced at 35 weeks because of IUGR and we did not find out about WHS until she was 8 months old. The Doctors did not see any problems with Taylor other than size so not much testing was done when she was born. I have had 3 kids and I did not breast feed with any of them. I do know that if I had known about Taylor’s condition before birth that I would have chosen to breast feed. Taylor does seem to spike fevers alot so we are going to see an Immunologist in March. They want to check her Immune System to find out where it is weak. They told me depending on what the results are that Taylor may have to go on some meds. I wish you peace in which ever way you decide to go.
Hi Brianna! I’m glad you found this website early! My daughter, Emma, is 4 years old and was diagnosed a couple weeks after she was born. She was only 3lbs 11oz and was induced 15 days early. She didn’t latch on well either and so I pumped for almost 6 months and I do think it’s helped her out. She is tube fed now and is 27 pounds! She gets colds sometimes and when she was younger they lasted longer than her siblings colds lasted but now they are less frequent and shorter. And Emma is loved by everyone so much, a true blessing to our family! I wish you the best of luck with labor and delivery and I very much look forward to seeing pics and hearing all about Arin Rae when she is born as well! 🙂
Dear Brianna,
I have just returned from a week long therapy-course for young children with severe sightdisabilities. One thought of consolation that the parents shared was that the children with special needs are always born into families that God/any higher force knows that will be the best possible. Reeding your text makes me sure that Arin Rae will get the best possible family she can have. And reeding the comments make me sure that she will have the best possible community to help you when you “need a village”.
My son who has WHS turned 1 on Monday (seems he is sharing birthday with Riley). He was small at birth and was given donated breastmilk feed with a spoon the first day. The sheer difference in size made latching on very difficult but I tried and had one successful feeding. My first child, a daughter, was also small at birth (premie) and through struggle I managed to get the breastfeeding going. I learned from her that you need 1) motivation 2) good instructions (e.g. Jack Newmans site) 3) good technique for expressing milk by hand 4) the best pump possible and 5) patience and time.
In the end, I never got the feeding going and did not suffer from bad feelings as I realised that I need to focus on so many other things too that breastfeeding is not worth running myself down over. I expressed milk with a pump and feed my som with a bottle for 3,5 months. I always thoght that any time is better than not trying at all, but forever struggling is no solution.
I share the thought of the other comments that weight gain will be slow and the temptation to do everything possible (formula, G-tube, calories) is great. However, hopefully Arin Rae will have a long time to grow so giving her the best possible nutrition, breastmilk only, for a few months will have a better impact on her overall health than securing maximum weight gain from the start. So my advise would be, give it a go – learn who Arin Rae is and try to feel what would be best for her. And if you have the possibility, get a speech terapist to meet with you and discuss feeding as soon as possible when you will start giving solids. Do not settle with one appointment, we have benefitted from follow-ups. (Today our son, 1y4d chewed and ate small soft pieces of roasted chicken!)
All the best to you and your family.
One more thing, if you need to use a bottle: try out different kinds in the hospital if you have the possibility. Or buy different ones in advance. Try different possitions. Try anything that improves feeding and stick with what works. Be stubborn. Do not care what others suggest, you can find out what is best. The nurses at our hospital helped us find the best solutions. Which ment that we had to bring bottles and formula to the hospital everytime he was at the ward, as they seldom had the kind that he accepted.
Brianna,
I want to chime in along with all the other great comments to welcome to you and your daughter Arin. My youngest son Frank has WHS and is 15 months old. His diagnosis came as a complete shock at three weeks of age. He had born at 7 lb 3 oz, which sounds huge for a child with WHS; however, my other three kids were all ten pound babies, so we knew something was “off” that he would be born so small. Wolf-Hirschhorn syndrome, however, was not what we were expecting to hear.
At the time we received the diagnosis, this site was not yet in existence, and we received all our information from the other medical sites on the internet. We were horrified. It sounded so awful. We joined the 4p- support group and received a welcome packet that said something along the lines of “welcome to the 4p- family!” I cried when it came because it wasn’t a family I wanted to join! I can laugh about that now because this really is such a great, supportive, caring group of people with beautiful children.
Although Frank was born bigger than most, he has struggled with weight gain. I’ve come to accept that he will be small. He is 15 months now and just passed the 14 pound mark this week. I tried desperately to breastfeed him (having successfully breastfed my three other kids), and it just didn’t work. He has a very recessed chin that made latching on too difficult, and he also had a weak suck. However, I did pump for several months and fed it to him with a bottle. He now takes a specialized “pre-digested” prescription formula in a bottle and some pureed foods off of a spoon. I do think the breastmilk is good (for all babies) but perhaps especially for the WHS kids, who have trouble absorbing the nutrients they need from other sources of food. Simply increasing calories will not necessarily cause weight gain.
If you can allow yourself to be comfortable with slow weight gain, it might ease some of the stress of learning to meet her needs, whether you choose to do breastfeeding or bottle or a combination. No weight gain would be a different story, and there are many in the 4p- family who could talk to you about using a G-tube, should you choose that.
We look forward to hearing more about Arin, and one of these days I’m going to post Frank’s story and pictures on this site. It’s one of those things I never seem to get around to doing. 🙂
-Heather
Hi Brianna. Welcome Arin. I , too, have a WHS child. Mine is my grandson,Carl, whom I am raising full time. He is 3 1/2 yrs old now and I have had him since he was 8 months. He has been an adventure, a mystery, a delight, a worry..if there is a pronoun or adverb you can come up with, prepare to experience it first hand. You will learn to; cheer the littlest advances, look up words you have never heard before [and probably cannot spell..lol] talk back to doctors; learn about medical equipment and nursing, and how to trust your own instinct. This is truly going to be your ‘trip to Holland, after planning a trip to Paris, but you won’t regret it. I have never regretted taking Carl as my own, nor will I. God has chosen you to say he believes in you, as he must, to give you this gift.Carl will be my ‘forever baby’..He did not know how to nurse or suck at birth and had a g tube inserted within a week. With the help of a wonderful speech therapist he now eats baby food by mouth, and drinks small quantities, tho his main nurishment still is delivered by the g tube. We live in lower Delaware and use AI Dupont hospital in Wilmington. They are a wonderful bunch of people there and you will get to know them well. We make a trip up there nearly every week for some appointment or another..feel free to look at my facebook..my name is dorothy ottinger and my email is dotti1022@comcast.net.There is a whs child living in Georgetown also, but I have not met him yet.
Do you carry it..the defect? I am a carrier..much of my family has carried it and lost children for years. Several children lived for a few years, Carl is the oldest Good luck to you and I hope I get a chance to meet you and your baby girl. D
Welcome!! We also got the diagnosis while pregnant. Magnolia was born weighing 3lbs 7oz. She will be 5 months old on Saturday and is currently weighing 7lbs 7oz. She was unable to nurse, but I pumped. We have been feeding her a half high calorie/half breast milk mix. She is doing great with it! She does have a G-Tube and gets feed for 8 hours at night by pump, but she takes all of her feedings by bottle during the day. We are so excited to meet Arin Rae.
We keep a blog as well http://iwontweargrey.blogspot.com/
If you have any questions that I could answer just email me. hilaryannl@yahoo.com
Good luck with the move.
~Hilary
HI Brianna,
You are moving not too far from us. We are in NJ and about 45 minutes from Newark. Are you going to use Dupont?
Mia has only ever been on formula and does not take anything by mouth. She used to but it was also supplemented with her gtube. I am glad you found the blog. You have a lot of people on here to answer any questions. Feel free to contact me at chrissyrivera@comcast.net. We would love to meet you!
Chrissy Rivera
mom to Amelia
Just like everyone else I to would like to say hello and Welcome to our Family.. Although my daughter Kailey is 18 years old, There are some things I do remember. 18 years ago Not much was known aboy WHS. She stayed in the ICU for 19 days. They ran every test they could. I had a C section due to me being Full term and her NOT. Just under 4lbs. They had me Pump my Milk and bring it to the hospital. She barely fit in my hand. By the time i brought her home , she would NOT take me. So in went the G tube. It’s a life saver when it comes to Medicine and Water! Yes she still has it. All the Doctors and test We had to do, From trips to UCLA and then some. She grew into seizures then grew out of them. Heart surgery. Tubes in ear. Hearing aides. Leg braces. Glasses to eye surgery. OT & PT. Schools. She is now 56 lbs and 56 inches tall. She does have her monthly. YUCK! Poor thing. 🙁 . But let me share with you something I just learned since she turned 18 She is an adult. So in order for me to continue to have a SAY in her Medical, Education, etc…. Visit your DMV get a ID. Write note saying that your child would like for you to continue with ALL Decisions Take it to a NOTARY have yor child mark and you the same. It;s Legal and ALL the $$ you save NOT going to Court to have them Draw up the papers for Guardinship! If any one would like to contact me i’m at pdot98@earthlink.net. So WELCOME to you and yours!! WE are ALL here to help! Take Care Tina
Welcome! I’m the mom of 2 boys with WHS- Carson is 5 and Patrick is in Heaven, having passed away after 151 beautiful days due to something unrelated to his WHS. I pumped for both my boys because neither of them was strong enough/ coordinated enough to latch on, which I hear is pretty common. My milk never came in the first time around, but the second time I knew what to expect and took Reglan and was able to provide all of Patrick’s milk for the first three months and 1/2 after that. Like Mihaela said- breastmilk is easily digested and has lots of natural goodness that our kids really need. Patrick’s doctors were among my biggest cheerleaders in my efforts to maintain my supply; he was born at 30 weeks weighing 810g (1lb, 13oz) and was able to avoid the digestive issues common to premies. Once he got his G-tube we’d feed my milk, fortified, and the hi-cal formula that way and then 1-3 times a day as he was able he’d get “fresh squeezed mama juice” in a bottle just for fun, bonding, and oral motor practice. That and bathtime were his favorite parts of the day! I liked it too- when you’ve got a baby who needs so many medical interventions it sometimes can seem like they’re not really yours. Providing custom-made personalized nutrition for my boy was one thing no number of specialists could do in my place! :o)
Long story short, breast milk rocks, it can be fortified if necessary, be prepared to pump, do it if you can. :o)
Hello again Brianna, I hope your move to DE has been an easy one. My Carl just got back out of the hospital, but this time not for an illness, just a surgery to correct his legs and hip. He was in for just two days, thank goodness, then back home again. Some pain, but he still manages a smile. It is slow going, but he still has come so far. Most doctors will tell you as soon as the WHS diagnosis is made that you baby may not live long. Dont listen as they dont really know. Carl has been through so much in his short life that he has developed quite a will to live, and that counts for a lot. Check out his story at http://www.caringbridge.org/visit/angelbabycarl. Read hsi story and look at his pictures. Carl is so loving, you would not believe..he loves to cuddle and kiss. He definitely is my angelbaby.