Last night, my daughter fell asleep on my chest. Maybe not all that notable, except that she’s not a baby, she’s six years old. She still needs my husband or I to stay with her until she falls asleep, but last night she crawled on top of me, stomach to stomach, head on my chest, and fell asleep. It was so very sweet (though difficult to escape from!), but mostly, it reminded me how very little she still is. I get at least one piece of artwork from her every day, usually a picture of our family. She loves to hold hands and snuggle. Her favorite outfits these days are too-big t-shirts from her dad’s childhood, paired with jeans so she can stick her hands in her pockets and proclaim “Look, I’m Daddy!” as she struts around the room. When her dad and I both join in a silly dance game with her, she positively beams up at us, so happy just to be with her family. I’m often struck by how much she’s growing up, but truly, six years old is still so little. Six is running in the sprinklers, building forts, playing with baby dolls and believing in magic.
When I talk with adoptive families, they often want to adopt
a younger child, and in many people’s minds “younger” seems to end at five
years old. But six-year-olds still very much need their mommies and daddies, and
there are so many six-year-olds who don’t have any. All these six-year-olds are
still waiting for families. Some have only been listed for adoption recently, but
many have been waiting since they were younger and still haven’t been chosen. Now
they are six- “older,” in the eyes of many, but with so much childhood still to
have. They just need a family to share it with.
One family’s journey adopting a child with Scoliosis
Since June is scoliosis awareness month, it seems only
fitting to introduce you to Madison. Not because she has scoliosis, but because
she is a person whose spirit shines despite scoliosis. Madison was adopted from
China about 4 years ago. Her story is like so many others who have been
fortunate enough to have Madison Adoption Associates involved in their adoption
Madison had been on
the shared list as a young girl, but was taken off that list because she was
seen as “unadoptable”. Not only was Madison’s scoliosis severe, but it was
complicated by a muscular dystrophy that left her in a state where any mobility
at all was severely limited. Fast forward many years and Madison Adoption
arrives to advocate for hard to place children. Our Madison was not on the list
of kids to be interviewed, but the team saw her in the periphery, were drawn to
her smile, and inquired about her. They took a personal interest in her and
convinced the staff that she was indeed adoptable and they would find her a
Madison came home to us and her 16 siblings not long after
that. She is a sassy, loving, considerate and strong individual. Her scoliosis
was of utmost concern as it was so severe it had already caused most of her
left lung to collapse. Her scoliosis put her in a position where any activities
of daily living were impossible, and it left her at a level where she could not
engage in life on the same level as others.
Surgery for scoliosis
was not taken lightly. There were many unknowns and many factors to consider.
Foremost in our minds was quality of life for Madison – that included physical
quality of life as well as emotional and social quality of life. It was 2 years
before we were able to get Madison to a place where she was physically strong
enough to handle the major surgery.
Madison’s curve was the largest surgical correction of its type that her surgeon had
ever performed. Her plan of care was altered from the norm in order to give her
the best chance for the fullest amount of correction. She entered the hospital
and was placed in halo traction for 3 weeks. She underwent another surgery to
release the muscles in her back and continued on traction for another 3 weeks.
She then underwent rod and hardware placement to stabilize her back. She never
lost her smile during all that time. We were looking forward to going home and
getting our family back together, Madison missed her siblings more than anything.
However, there were
complications. Madison had to be taken to emergency surgery for removal of the
rods due to nerve damage. A few other complications occurred and Madison was
starting to lose her smile for the first time ever. We consulted with doctors
and determined a short reprieve at home with halo in place was what she needed.
Family had become so important to her and she was missing that security so
much. After 10 days at home we returned to the hospital once again to start the
process over again. Since her back muscles had been released, she needed to
have stabilizing hardware put in. We
could not just stop at this point in the journey. Madison was the smiling
champion we knew her to be and sailed through the remaining
time in the hospital. After almost 4 months in the hospital we came home with a
much taller Madison who was able to engage in life like never before. She
continues to thrive and build strength. Her smile only gets brighter.
We share our journey because we want to provide encouragement if you are considering adopting a child with scoliosis. Every case is different, but there is a person held up by that bent back that makes the journey so rewarding. One of the greatest rewards of adoption is having the privilege to watch your child grow and become the person they were created to be, and sometimes that happens through the challenges they face. It was so apparent that having a family to support her through the most difficult parts was what gave Madison the strength and motivation to endure. She fills our life with such joy and inspires each of us to live better lives as we watch her live a life full of joy despite her physical challenges.
Thank you to Madison and the Bernadsky family for sharing their journey! In honor of June being Scoliosis Awareness Month, Madison Adoption Associates is pleased to offer a $1,000 grant to any qualified family who commits to adopt a child with Scoliosis during the month of June. Please complete our Prospective Adoptive Parent form today to learn more about our adoption programs and the children who wait, like Quaid and Legend below!
So often, a specific child touches the heart of one of our
staff, and that staff member makes it their number one priority to do whatever
they can to find the perfect family for that child. Don’t get me wrong, ALL waiting children are
our priority – we wouldn’t be in this work if they weren’t! But for each of us, there are several children
who, over the years, stand out in our minds.
Several that really imprinted on our hearts, and will stay there
forever. For me, the tears of joy were indescribable
came home! But the tears shed for ‘Lizzie’ were
much different, as, despite our best efforts, she ran out of time to find a
family. At the end of the day, it is the
tears and the passion from both outcomes that urge us to keep pressing
on for the next child. To keep marching
forward, and to keep doing ALL we possibly can to get even just one.more.child home
to a forever family.
‘Doing ALL we possibly can’ looks different for every child and every agency, especially in the midst of a global pandemic! Once we have exhausted every single thing we know to do, we must sometimes think outside of the box. So when we received the email from our colleagues at Agape, or rather, the plea, on behalf of Harry, to help advocate, to jump alongside them to collectively do ALL we possibly can to find this boy a home, we didn’t hesitate. Not even for a moment. Because it doesn’t matter what agency. It doesn’t matter who finds a family for him. ALL that matters is that his family IS found. Before it is too late.
Harry is a sweet boy, who will ‘age-out’ of China’s child
welfare system in October of this year, losing his last chance at a
family. He loves fried chicken, steak,
and hamburgers (a boy after my own heart!).
And he’s very interested in learning how to cook. From those who have met him, Harry has been
observed to be very helpful and attentive towards others.
Harry (formerly Hudson with MAA) is waiting in China. He is 13 ½ years old, and will ‘age-out’ in October. Harry’s file is currently with Agape, and there are grants available to the qualified family who commits to adopt him. Please contact firstname.lastname@example.org or email@example.com for more information about this precious boy. Or feel free to complete and submit our Prospective Adoptive Parent form and an Adoption Specialist will be in touch to discuss your international adoption options!
When we talk to families about the children who typically wait for adoptive families, there are some common themes: usually children with medical or developmental needs, lots of boys, older children, and siblings. Many families will reply that they are open to siblings, however, the majority of those families are only open to a pair of siblings. So when we learn of a group of three or more siblings who must be placed together… a lot of those raised hands go down.
This is understandable, adopting two children already means more than the double the adjustment, so bringing home three is not something to undertake lightly. That said, I wonder how many families say “no” immediately, without considering- could we really bring three home? It’s not for every family, and we never want families to delve into something they aren’t prepared for, but we hope to encourage you to think about whether you might be the family to keep three siblings together. And who better to help you think through if you could than the families who have already done it?!
Shane and Sarah were first time parents when they adopted. After having their niece stay with them for a couple years in high school and college, they felt prepared to adopt older children, and joined MAA’s hosting program in summer 2018. “Originally, we thought we were more suited for hosting/adopting one child because the thought of three was overwhelming at first,” says Sarah. “When we learned of three girls who needed a hosting family, we went on a whim and gave it a try! We felt an instant connection with our girls and had the space for three.” Shane and Sarah hosted when the twins were 9 years old and the eldest was 13, and they were able to travel to Colombia and finalize the adoption the following year.
Other families already have some parenting experience under their belt when they decide to bring home siblings, like Chelsea and Steven, who had one son adopted domestically when they brought home their daughters from Colombia at six, four and two years old. “We think it definitely helped. We had established our parenting style and knew (at least somewhat) what to expect from kids his age and younger.”
Richard and Leonardo also had experience parenting, having previously fostered a single child, and a pair of siblings, but never three at once. They knew they eventually wanted more than one child, but thought they would ease into it by adopting one child first. However, their views changed after a trip to Colombia and learning of the need for families willing to adopt larger sibling groups so that children could stay together. “We realized that we could keep these families together and do so much good from this while still keeping within our comfort level.” It was only a couple months into the process that they learned about the group of three children they would ultimately adopt, who were four, five and six years old when Rich and Leo brought them home earlier this year.
Bringing siblings home together has a lot of benefits and joys, for parents and kids! “Being able to see these beautiful children growing together in our home is hands down the most rewarding,” says Richard. “The children are so tightly bonded to each other that it made the transition emotionally easier on them.” Sarah agrees, “We are so happy they have each other to maintain some of their heritage and traditions. I think one child would get lonely at our house and we didn’t think we could afford to go through the adoption process multiple times.” Siblings are often the one biological familial connection an adoptee has left, so maintaining that by keeping children together has enormous emotional benefits.
That doesn’t mean it doesn’t come without challenges though! “The most challenging thing about adopting three children is of course building on each child’s strengths and improving their weaknesses without any of them feeling left out,” reports Sarah. “These children have deep hurt, and strong emotions come out when recognition, praise, or discipline is given to one child and not the other.” Meanwhile for younger children, Richard says the biggest challenge was “hands down the temper tantrums that they learned from being in an orphanage”- times three! “The three would feed off of each other which made for some challenging times.” However, he says it didn’t last long, and with consistent parenting and structure new, more appropriate behaviors emerged within a month.
So what’s the most important quality for families who are considering adopting a group of three? “Flexibility. Life is going to change like never before and it’s going to keep changing. It’s easier when you can go with the flow and adapt,” says Chelsea. Richard says the key for them has been a strong family foundation- physically, financially, and emotionally. “Having a strong bond between my husband and I has made this transition so much easier for us and the children.”
So as you consider the type of children your family is open to adopting, take the time to think about whether you could adopt three siblings together. It’s important to be realistic about your resources, but don’t let fear prevent you from saying yes to something hard but beautiful. “It has been the hardest thing we have ever done. I was honestly terrified the entire 6 months we spent preparing for this adoption. Terrified we would regret our decision. Terrified we would fail at parenting 4 kids under age 7,” says Chelsea. “But it has been the BEST thing we have ever done. My husband and I and our son have grown so much as a result of this experience and we love our three girls to the moon and back! It feels like they have always been a part of this family and we truly believe we were meant for each other.”
We are currently advocating for sibling groups of three in Colombia, Bulgaria, the Philippines, and the Dominican Republic. To learn more about these children who wait, fill out the free Prospective Adoptive Parent form today to connect with an Adoption Specialist!
We caught up with Brooke Henningfeld, MAA Advocate and adoptive Mama, to pick her brain about parenting an adopted child with Thalassemia….
Brooke, can you tell us a bit about your
Bao Sha Hao came into the care of his
orphanage at the approximate age of one. Our family met this child we lovingly
refer to as Reid Sterling ShaHao Henningfeld in Guangzhou, China on his 6th
birthday! Reid was born in Shenzhen with beta thalassemia major, the most
severe form of thalassemia. He is now nearing thirteen and
thriving! When we were deciding to adopt a child with thalassemia, we
didn’t really have any concerns because our hearts were so drawn to the photos
and videos we saw Madison Adoption Associates advocating for. We weren’t
thinking about his special need, but saw him for the adorable little boy he
was! Thalassemia didn’t, and still doesn’t, define who Reid is.
He’s never really had any limitations because of his medical
need. My husband, Rick, and I knew we had good medical insurance
and an excellent children’s hospital within an hour drive. We had learned
a fair amount of information from adoptive parents of children with thalassemia
that had gone before us, but figured we’d learn as we go; that we did, and we
continue to do!
What is thalassemia?
Thalassemia is a big word, but it isn’t a
scary special need. It is, in fact, a very manageable medical
condition. The first few months after a ‘thal’ child comes home can be a
little overwhelming, with trying to get the child’s hemoglobin to a stable
level, going to some extra appointments that ultimately become annual
appointments, and trying to get into a regular transfusion day
schedule. All of this becomes another part of routine life quite
quickly though! There are various forms of thalassemia. Some
require regular transfusions and others don’t. As I already mentioned,
our son has the most severe form of thalassemia. Because Reid has the
most severe form and his red blood cells do not make hemoglobin correctly, Reid
needs regular transfusions. Hemoglobin is what moves the oxygen around
our bodies, which helps give us energy. The blood transfusions Reid
receives keep him alive and are 100% necessary!
The downside to the transfusions is that
it puts a lot of extra iron into Reid’s body. Transfusion dependent
patients often have iron overload and need to take a daily chelator to remove
the excess iron from their bodies, which likes to store up in organs like the
heart and liver. This can be damaging to these vital organs, so the
chelation medication is necessary when the iron levels are higher than they
should be. There are currently three chelation options. Two of the
chelators are oral medications and one is not. Our son has taken both
oral chelators. At one time, he needed both at the same time. This
is another part of our regular routine and has never really been much of an
issue for our son. To monitor the heart and liver iron content, Reid
receives an annual MRI. In addition to this, we visit with the
ophthalmologist and ENT annually for a quick check of the eyes and ears, due to
risk factors from one of the chelation medications he’s been taking.
How often are transfusion dependent thal
Transfusion dependent thal kids receive a
transfusion approximately every two to four weeks. The younger children
can often make it every four weeks before needing a ‘fill-up.’ Older
children and adults generally need to go every two to three weeks. This
varies from person to person and by the type of thalassemia a patient
has. I would recommend any family considering adopting a child with
thalassemia to be prepared that the child could have the most severe form of
thalassemia and to be prepared for transfusions every two to three weeks.
Transfusions are scheduled based on the child’s current hemoglobin levels, and
the amount of blood the child receives is based on their current weight.
Reid has been transfused just about every three weeks since he came home at age
six. Occasionally, and often in the summertime, his hemoglobin levels get
a little lower than we’d like to see and he goes in every two weeks for a few
transfusions and then is back to the every 3-week rotation. Normally, we
can bank on every third Friday and we plan life around those dates. We
are fortunate that our clinic is very open to us changing the day of the week
we come, if we needed to do that for any reason.
What does a transfusion day look like?
Well, it’s going to look different for
every family for multiple reasons. For our family, Reid and one of his
parents generally leave the house at around 7:30 a.m. on a transfusion
day. We make the 50-60 minute door-to-door drive to Children’s Hospital
of Wisconsin-Milwaukee. We leave our car with the wonderful Children’s
valet team and walk straight into the hospital (except during the corona virus),
check-in at the front desk, and head up to the amazing 5th floor
MACC Day Clinic for children with cancer and other blood disorders for our 8:30
a.m. appointment. We check in at their desk and get sent to a
private room. Within minutes of getting into the room, Reid has his
height and weight checked. We then wait for the team to come in and draw
blood for the labs needed to match the blood for that transfusion. They
also put an IV in at that time. Reid has just about always had that put
in the fold of one of his arms. In the past, when we transfused on a
Tuesday, we would do labs on a Saturday morning at a Children’s facility a
little bit closer to home and then make a day of it with our family in that
area, such as a family trip to the zoo. Labs can be done up to 72 hours
before a transfusion. When we moved our transfusions to a Friday, we
didn’t want Reid missing more school than he already does, so we just decided
to do labs on the same day. Labs on the same day make for a longer
transfusion day, but haven’t turned out to be as difficult as we thought they
might be. Once labs are drawn, we wait for the blood to arrive.
Reid works on his homework if the transfusion day is a school day and he puts
his lunch order in for the approximate time he wants it to arrive. If
it’s a non-school day, Reid might watch some tv, play some video games, or make
some art projects in the commons/shared area of the MACC clinic. There
are even wonderful child-life staff and volunteers who come around asking if
Reid would like to play a game or do a craft with them! The staff and
volunteers have become like family to us!
Once the blood arrives, two nurses ‘tag-team’
and get everything entered into the computer and get Reid hooked up. Once
the transfusion starts, Reid is hooked up to an IV pole, but can move fairly
freely around the room or the commons area, except during flu season/this
corona virus time when he needs to stay in his room unless using the
bathroom. Reid continues to work on his homework or play games, videos
games, or do art. His food comes for him and the parent with him either
brings lunch from home or goes down to the cafeteria basement to get a lunch to
bring back to the room. Based on Reid’s weight, he currently receives 2
full units of blood. His vitals are monitored and checked regularly by the
staff. When one unit is done, the second unit is attached fairly quickly
thereafter. Once the second unit is complete, Reid has his IV
removed and is no longer attached to the IV pole. He has a 30-minute wait
period to watch for any sort of reaction. His vitals are then checked again and
we are free to go home! By this time, it is generally somewhere
between 2:30-3:30 p.m. and we wait for our car and return home between 3:30 and
4:30 p.m. As Reid gets older and continues to grow and gain weight, we
realize that transfusions may need to be a bit closer together or the days may
get a little longer because of increased blood volume.
What should a prospective adoptive family
considering adopting a child with thalassemia know?
Good insurance is definitely important
for a family considering adopting a child with thalassemia and a prospective
adoptive family should know that life with thalassemia is a marathon and not a
sprint! The hemoglobin and iron levels kids with thalassemia come home to
their families with is the worst they will ever be at that moment. It
will and does get better with time and they will thrive with the love of a
forever family, good nutrition, and optimal medical care. It’s amazing to
witness the changes in an adopted child with thalassemia over time and a true
blessing to be the one they call mom or dad. There is a terrific support
network for families with children with thalassemia, from the Cooley’s Anemia
Foundation who give $1,000 grants to families adopting transfusion dependent
thal children, hold annual conferences for thal patients and their families,
and who provide very helpful standards of care for thal patients to the
ever-supportive and helpful thal families’ Facebook groups, where someone is
always ready to answer questions you have and have your back! You and
your adopted child with thal will never feel alone!
Boys and children over 5 with a special need like thalassemia are at a unique disadvantage because the majority of prospective adoptive parents are hoping for a child 0-5, with minor needs, and because girls are preferred to boys. There are often ten or less children with thalassemia who are paper-ready and waiting at any given time. More families are stepping up to adopt children with thalassemia, which is awesome, but the boys and those who are older tend to wait and wait. Right now, there are some amazing waiting kids (mostly boys) with beta thalassemia who are 7-13 years old. They desperately need families. Often the biological families of these children desperately want to keep their children, but they cannot afford their medical care. In many cases, families in China have abandoned these children with the hopes that they will be adopted and be able to live a longer and healthier life because of the medical care they cannot provide their child. It is often a matter of life and death for these children and their lives will forever change once they are in a loving home and getting that medical care they so desperately needed. Thriving with thal can be a real reality for these children!
Please note that Brooke is not a medical professional, and she is only sharing information about Thalassemia based on her own personal experiences. Please consult with a medical professional to discuss individual treatment options for you, your child, or any child with Thalassemia who you are considering adopting.
THANK YOU BROOKE for sharing your experience and encouraging others to consider adopting a child with Thalassemia!
As Brooke mentioned, many children with transfusion dependent Thalassemia are waiting for a family! Like Sutton, Peter, Duncan, and Bradley!
In honor of World Thalassemia Day, Madison Adoption Associates is honored to provide a $1,000 grant to any family who commits to adopt a child with transfusion dependent Thalassemia by the end of May. This is in addition to MAA’s $1,500 Holding Hope grant that is available through May 31!
Interested in learning more about adopting a child with Thalassemia? Please complete our Prospective Adoptive Parent form and an Adoption Specialist will be in touch!
Not in a position to adopt right now? You can still help! Donations like yours help allow us to continue to provide grants to families! Please consider donating today, so the waiting children can have a chance at a tomorrow.
And please remember, in honor of Reid, and all of the children worldwide who rely on blood transfusions for survival, consider donating blood! Contact your local American Red Cross to find out more information on how to do so!!